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	<title>The Erika Kate Foundation</title>
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	<link>http://erikakate.org/</link>
	<description>helping ease the emotional, spiritual, and financial burdens borne by parents of children with life threatening heart disease</description>
	<pubDate>Wed, 24 Feb 2010 03:48:38 +0000</pubDate>
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		<title>Sydney&#8217;s Story</title>
		<link>http://erikakate.org//2010/02/23/sydneys-story/</link>
		<comments>http://erikakate.org//2010/02/23/sydneys-story/#comments</comments>
		<pubDate>Wed, 24 Feb 2010 03:39:04 +0000</pubDate>
		<dc:creator>amygubser</dc:creator>
		
		<category><![CDATA[Featured Articles]]></category>

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		<category><![CDATA[Friends of EKF]]></category>

		<guid isPermaLink="false">http://erikakate.org//?p=1216</guid>
		<description><![CDATA[On May 21, 2009, Andy and Brandi Mead met during a lunch hour for a routine OB appointment and, very unexpectedly, Sydney Mead was born a few hours later.  The events that unfolded after this moment have been everything but ordinary and the Mead family has grown in faith and patience during the past several [...]]]></description>
			<content:encoded><![CDATA[<p>On May 21, 2009, Andy and Brandi Mead met during a lunch hour for a routine OB appointment and, very unexpectedly, Sydney Mead was born a few hours later.  The events that unfolded after this moment have been everything but ordinary and the Mead family has grown in faith and patience during the past several six months.</p>
<p>Sydney Mead was born in Jackson, Mississippi and spent 110 days in hospitals before arriving at her home for the first time on September 4, 2009.  She was transferred after birth to Children’s National Medical Center in Washington, D.C., where she had open-heart surgery.</p>
<p><a href="http://erikakate.org/wordpress/wp-content/uploads/2010/02/sydney.jpg"><img class="alignleft size-medium wp-image-1217" title="sydney" src="http://erikakate.org/wordpress/wp-content/uploads/2010/02/sydney-300x199.jpg" alt="sydney" width="300" height="199" /></a></p>
<p>Sydney has a condition called Williams Syndrome.  It’s a genetic disorder that affects about one in 30,000 newborns and is commonly associated with congenital heart defects.  Sydney’s heart condition is known as coarctation of the aorta, which involves a narrowing of the large artery exiting her left ventricle.  Part of her aorta was narrowed, making it hard for her heart to pump blood through the artery and on to the rest of the body.</p>
<p><span id="more-1216"></span>During her 110 days in the hospital, Sydney had one open-heart surgery, two heart caths, and saw more than 11 doctors including cardiologists, geneticists, dieticians and neurologists.</p>
<p>Being over 1,000 miles from home and from their family, Andy and Brandi relied heavily on a relationship with cardiac social worker, Heather Langlois.  It was through this relationship that they learned of the Erika Kate Foundation and applied for assistance.</p>
<p>Before Sydney was born, the Meads had purchased a home for their new family. They were locked into a scheduled closing but were unable to move into the new house because they were at Sydney’s side at the hospital. The family incurred the expense of a mortgage payment and a rental payment until arrangements could be made to move.</p>
<p>With both parents unable to work and the additional costs of living near Sydney for 3 ½ months, the family soon needed assistance. The Erika Kate Foundation was able to offer assistance paying some of the family’s expenses and offer emotional support to Andy and Brandi. Brandi stated, “Without the help of EKF, families would struggle even more and some may not be able to remain bedside with their child.”</p>
<p>Sydney and her parents returned home on September 4th, 2009 and she continues her care in her hometown of Jackson.  Both Brandi and Andy felt it was too good to be true that they were finally home with their baby.</p>
<p>“No one is ever prepared for something like this to happen to their child; it has changed our family forever.  I think it is great that people who have been through trying times then reach out to others to help them through their experiences. It’s been wonderful working with EKF.  We have learned much through this experience and hope to help others in the future.” – Brandi Mead</p>
<p><a href="http://erikakate.org/wordpress/wp-content/uploads/2010/02/sydneymead1.jpg"><img class="alignleft size-medium wp-image-1218" title="sydneymead1" src="http://erikakate.org/wordpress/wp-content/uploads/2010/02/sydneymead1-300x199.jpg" alt="sydneymead1" width="300" height="199" /></a></p>
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		<title>Remembering Ricky Wegener</title>
		<link>http://erikakate.org//2010/01/08/remembering-ricky-wegener/</link>
		<comments>http://erikakate.org//2010/01/08/remembering-ricky-wegener/#comments</comments>
		<pubDate>Sat, 09 Jan 2010 04:45:56 +0000</pubDate>
		<dc:creator>amygubser</dc:creator>
		
		<category><![CDATA[Featured Content]]></category>

		<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://erikakate.org//?p=1211</guid>
		<description><![CDATA[The Erika Kate Foundation would like to remember our friend Ricky Wegener, who passed away on December 14, 2009.  Ricky was born on February 16, 1998.
Please continue to think of Ricky&#8217;s mom, Trisha, and their family.  Our prayers are with all of you.
An article about Ricky was featured in our 2009 year-end newsletter, and can [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://erikakate.org/wordpress/wp-content/uploads/2010/01/richard-wegener-3.jpg"><img class="alignleft size-medium wp-image-1213" title="richard-wegener-3" src="http://erikakate.org/wordpress/wp-content/uploads/2010/01/richard-wegener-3-300x200.jpg" alt="richard-wegener-3" width="300" height="200" /></a>The Erika Kate Foundation would like to remember our friend Ricky Wegener, who passed away on December 14, 2009.  Ricky was born on February 16, 1998.</p>
<p>Please continue to think of Ricky&#8217;s mom, Trisha, and their family.  Our prayers are with all of you.</p>
<p>An article about Ricky was featured in our 2009 year-end newsletter, and can be read by following <a href="http://erikakate.org/wordpress/wp-content/uploads/2009/12/EKF%20Newsletter%202009%20FINAL%20hires.pdf">this link</a>.</p>
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		<title>Heart Transplant Recipient Gives Thanks</title>
		<link>http://erikakate.org//2009/12/26/heart-transplant-recipient-gives-thanks/</link>
		<comments>http://erikakate.org//2009/12/26/heart-transplant-recipient-gives-thanks/#comments</comments>
		<pubDate>Sat, 26 Dec 2009 15:44:43 +0000</pubDate>
		<dc:creator>Rich Maynard</dc:creator>
		
		<category><![CDATA[Featured Articles]]></category>

		<guid isPermaLink="false">http://erikakate.org//?p=1201</guid>
		<description><![CDATA[

(CNN)
&#8211; Every morning, Christy Farley rises from bed and feels relieved.
&#8220;Not a day or minute goes by where I don&#8217;t think about how lucky I am just to be here,&#8221; said Farley of Hasbrouck Heights, New Jersey. &#8220;I thank God every day when I wake up that I woke up.&#8221;
 
http://www.cnn.com/2009/HEALTH/12/21/pediatric.heart.transplant/index.html
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			<content:encoded><![CDATA[<p><strong></strong></p>
<p><a href="http://www.cnn.com/2009/HEALTH/12/21/pediatric.heart.transplant/index.html"><img class="size-thumbnail wp-image-1203  alignleft" style="margin: 5px;" title="story_farley_heart_ctsy" src="http://erikakate.org/wordpress/wp-content/uploads/2009/12/story_farley_heart_ctsy-150x150.jpg" alt="Transplant Recipient- Christy Farley" width="150" height="150" /></a></p>
<p>(CNN)</p>
<p>&#8211; Every morning, Christy Farley rises from bed and feels relieved.</p>
<p>&#8220;Not a day or minute goes by where I don&#8217;t think about how lucky I am just to be here,&#8221; said Farley of Hasbrouck Heights, New Jersey. &#8220;I thank God every day when I wake up that I woke up.&#8221;</p>
<p> </p>
<p><a href="http://www.cnn.com/2009/HEALTH/12/21/pediatric.heart.transplant/index.html">http://www.cnn.com/2009/HEALTH/12/21/pediatric.heart.transplant/index.html</a></p>
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		<title>2009 Year End Newsletter</title>
		<link>http://erikakate.org//2009/12/09/2009-year-end-newsletter/</link>
		<comments>http://erikakate.org//2009/12/09/2009-year-end-newsletter/#comments</comments>
		<pubDate>Wed, 09 Dec 2009 21:43:11 +0000</pubDate>
		<dc:creator>amygubser</dc:creator>
		
		<category><![CDATA[Featured Articles]]></category>

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		<guid isPermaLink="false">http://erikakate.org//?p=1186</guid>
		<description><![CDATA[2009 has been a memorable year!  Significant progress has been made in the continued development of the Erika Kate Foundation.  Please read more from our 2009 Year End Newsletter here.
]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft" title="Newsletter Thumbnail" src="http://erikakate.org/wordpress/wp-content/uploads/2009/12/09news-150x150.jpg" alt="" width="150" height="150" />2009 has been a memorable year!  Significant progress has been made in the continued development of the Erika Kate Foundation.  <span id="more-1186"></span>Please read more from our 2009 Year End Newsletter <a href="http://erikakate.org/wordpress/wp-content/uploads/2009/12/EKF%20Newsletter%202009%20FINAL%20hires.pdf">here</a>.</p>
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		<title>Be Right Here, Right Now</title>
		<link>http://erikakate.org//2009/11/24/be-right-here-right-now/</link>
		<comments>http://erikakate.org//2009/11/24/be-right-here-right-now/#comments</comments>
		<pubDate>Wed, 25 Nov 2009 03:54:36 +0000</pubDate>
		<dc:creator>amygubser</dc:creator>
		
		<category><![CDATA[Featured Articles]]></category>

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		<category><![CDATA[Friends of EKF]]></category>

		<guid isPermaLink="false">http://erikakate.org//?p=1171</guid>
		<description><![CDATA[Ani and Jeremy Karg are the parents of four daughters, Madi – 9, Selah – 6, Veiyah – 1, and Aderah, Veiyah’s twin, who passed away on Sept 10, 2008 before she was born.  Veiyah and Aderah were born on Sept 25 2008, Veiyah with serious heart complications.  Veiyah is fighting her battle daily, and [...]]]></description>
			<content:encoded><![CDATA[<p>Ani and Jeremy Karg are the parents of four daughters, Madi – 9, Selah – 6, Veiyah – 1, and Aderah, Veiyah’s twin, who passed away on Sept 10, 2008 before she was born.  Veiyah and Aderah were born on Sept 25 2008, Veiyah with serious heart complications.  Veiyah is fighting her battle daily, and from the sound of her at home in the background during the interview for this story, she is up for the fight.  Over the past year, Veiyah has had several emergencies, and right here, right now, she is doing well.</p>
<div id="attachment_1173" class="wp-caption alignleft" style="width: 276px"><a href="http://erikakate.org/wordpress/wp-content/uploads/2009/11/kargv3wksbtshunt.jpg"><img class="size-medium wp-image-1173" title="kargv3wksbtshunt" src="http://erikakate.org/wordpress/wp-content/uploads/2009/11/kargv3wksbtshunt-266x200.jpg" alt="kargv3wksbtshunt" width="266" height="200" /></a><p class="wp-caption-text">Veiyah at age 3 weeks, at her first BT shunt surgery</p></div>
<p>As Ani and Jeremy went through these emergencies, and before Veiyah had her first shunt implanted in her heart, the chief surgeon told them that they needed to be in the present moment each day with their sweet Veiyah, don’t hold her back, let her live her life in her own way, at her own pace.  He told them to live in the moment.</p>
<p>Ani and Jeremy have learned the most important thing for them as a family is to “Be Right Here, Right Now.”  They don’t spend time contemplating the future – there is not time with their busy household of three children, one who needs constant care.  And, they don’t want to think about what the future holds because they know that their lives can change, literally, in a heartbeat.  What they do focus on is making sure Veiyah has all the opportunities for improving through surgery and medication.  They trust in God, and they trust their doctors to find the best possible answers.  They focus on their family in each moment, drawing close together, supported by extended family, friends, Jeremy’s work colleagues, their church in Cedar Rapids, Iowa, and the Erika Kate Foundation. <span id="more-1171"></span></p>
<p>How their lives have changed<br />
Ani and Jeremy believe strongly that in the midst of this storm over the last year they have grown closer in their marriage, have grown in their faith, and that Madi and Selah have matured beyond their years.</p>
<p>The family is surrounded by love of family and friends, and at the same time the family is isolated by Veiyah’s condition.  Because exposure to germs is a high risk for Veiyah, the family can’t go out to do those normal family activities that we all take for granted.  Madi and Selah are home-schooled, which helps keep the exposure to the outside lower for Veiyah.  Ani had already been homeschooling Madi for a few years before the twins were born.  She now knows that it was part of her preparation to prepare a safer home for Veiyah.</p>
<p>Everyone, including Veiyah’s older sisters, help with the caretaking.  With such traumatic events happening in their lives, Madi and Selah were forced to grow up early.  Although Ani feels guilt about that, she knows it is out of her hands.  She said it is amazing how Selah talks about Aderah in her every day life.  It makes Selah cry, but it is part of who she is, and she takes Aderah wherever she goes.  Both sisters want to grow up to be a doctor or nurse.</p>
<p>Ani and Jeremy kept the older girls close to them as the tragedy unfolded.  Whenever possible, Madi and Selah were at the hospital, staying close by.  It was important for Ani and Jeremy to make sure their older daughters felt needed, that they were a priority, and that they felt close to their parents as the family was reeling from each new emergency.</p>
<p>Support from others<br />
<a href="http://erikakate.org/wordpress/wp-content/uploads/2009/11/karg11.jpg"><img class="alignleft size-medium wp-image-1177" title="karg11" src="http://erikakate.org/wordpress/wp-content/uploads/2009/11/karg11-186x200.jpg" alt="karg11" width="186" height="200" /></a>Ani and Jeremy are grateful for the support they have received from others.  Their extended family has helped take care of the children and provided financial support. Jeremy’s colleagues at work donated their vacation days last Christmas so that he could take more time to be with his family.  They also held a fund raiser for Veiyah.  Their home church stood behind them providing support with love offerings, constant prayer, and being available at all times.  The Erika Kate Foundation provided financial support for lodging in Iowa City and also helped pay a months mortgage.  Neighbor’s raised money with a lemonade stand.   The Karg’s feel surrounded by love and support.</p>
<p>Ani said that in the past she had not known what to say to someone who had lost a child.  Now she knows that it is good to ask questions, to talk about how they are doing.  They welcome questions about Aderah and Veiyah.  It doesn’t hurt to talk about it.  “We are still who we are – and we love to talk to you.  We are seeking it now more than ever”.</p>
<p>Jeremy talked about the best way to provide support.  “During the difficult times over the last year, we have had people ask us numerous times if there was anything they could do to help us.  Most of those times we were in such a grief stricken state that we could not communicate the things that people could do to help.  I would encourage people reading this that if you know people or have family that are going through a loss of a child and/or the struggles of a disabled child, to not just ask what you can do, but sometimes just DO.  In the middle of our struggles it was the things that people did without asking that meant the most.  That showed us that they really cared enough not just to ask us what we needed, but to really try to understand what we were going through and to make an effort to help out with action.  We have also encountered the sentiment from family/friends who feel like they need to give us space during trials, or do not want to talk to us about difficult situations such as the loss of Aderah, because they think that is best for us.  I can understand these feelings, because my thought process was the same before going through the trials of the last year.  My encouragement to others in this area is that it is healthy to talk about difficult situations and feelings of loss.  If there are times when we don’t want to have those discussions, we will tell you.  Be willing to be close to your friends and family during their trials.  Be willing to talk openly about the loss of someone close.  Be willing to visit a gravesite and be bold about your commitment to remember and honor a friend’s or family member’s loved one.  For me, there is no greater show of support then to know that people love, honor, remember, and respect the lives of Aderah and Veiyah.”</p>
<p><a href="http://erikakate.org/wordpress/wp-content/uploads/2009/11/kargvone.jpg"><img class="alignleft size-medium wp-image-1174" title="kargvone" src="http://erikakate.org/wordpress/wp-content/uploads/2009/11/kargvone-133x200.jpg" alt="kargvone" width="133" height="200" /></a>The Kargs feel that along with this support, God has “held” them, made them feel more secure, and given them courage for the road ahead.   Knowing that they have the love of God, family, and friends for this journey allows them to live in the moment, meeting each day as it comes, loving each other, clinging to God, and praying for miracles.</p>
<p>The Kargs have a beautiful blog that gives current updates on Veiyah’s condition, as well as the history of their journey.  http://www.kargfamilyupdates.blogspot.com/.</p>
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		<title>Thanksgiving Message,    Written by Jeanne Shields</title>
		<link>http://erikakate.org//2009/11/24/thanksgiving-message-written-by-jeanne-shields/</link>
		<comments>http://erikakate.org//2009/11/24/thanksgiving-message-written-by-jeanne-shields/#comments</comments>
		<pubDate>Wed, 25 Nov 2009 02:29:01 +0000</pubDate>
		<dc:creator>amygubser</dc:creator>
		
		<category><![CDATA[Featured Articles]]></category>

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		<guid isPermaLink="false">http://erikakate.org//?p=1149</guid>
		<description><![CDATA[I will admit that I did not truly understand or appreciate the meaning of Thanksgiving before this year.   For me, Thanksgiving was about finding the perfect turkey, scouring the pages of Bon Appetite for the best side dishes, eating dinner with those I loved, saying a blessing over the meal, and then bracing for the [...]]]></description>
			<content:encoded><![CDATA[<div id="attachment_1151" class="wp-caption alignleft" style="width: 276px"><a href="http://erikakate.org/wordpress/wp-content/uploads/2009/11/p2110058.jpg"><img class="size-medium wp-image-1151" title="p2110058" src="http://erikakate.org/wordpress/wp-content/uploads/2009/11/p2110058-266x200.jpg" alt="p2110058" width="266" height="200" /></a><p class="wp-caption-text">Lauren at CHONY pre-transplant</p></div>
<p>I will admit that I did not truly understand or appreciate the meaning of Thanksgiving before this year.   For me, Thanksgiving was about finding the perfect turkey, scouring the pages of Bon Appetite for the best side dishes, eating dinner with those I loved, saying a blessing over the meal, and then bracing for the holiday gift buying rush.</p>
<p>It is a life altering experience to have an 8 yr old child in the  ICU on cardiac and respiratory life support awaiting a heart transplant.  While she was held in a drug induced coma, I had many days and nights to reflect on how we lived our life.  It is so easy to get caught up in the hustle/bustle of the day.  I realized I had let many things slide through the cracks.   My career was important and I loved it but it secretly put a wedge between me and my family. I was caught in the desire to succeed.  In an instant, as my daughter’s health went from perfect to failing, the perks that went with the career suddenly meant nothing.  All that mannered was the health of the little girl whose face peeked out from behind the blanket. I realized I had not spent enough time with her.  I realized even though my son excelled in school and swimming, he still needed his mom and was so worried about his sister.  The things that I had worked so hard to acquire meant nothing, indeed, I wished I had none of it, it was truly not important at all.</p>
<p>Our children’s pediatrician had said to me many times that the most important thing in life is your health.  How true is this?  I wrote constantly about the days spent in the hospital.  I journaled almost every day. I think this entry sums things up….<span id="more-1149"></span></p>
<p><em>March 2, 2009…….</em></p>
<p><em>I am waiting.  I know it is close. Her heart must arrive soon.  I only wish I knew when.  I think to myself maybe if I knew, I would be able to feel a little better right now.  I need to be strong for her and when she says, “I want to go home mommy”, I could melt.  I want to cry out with her and say, “Yes, me too!” instead   I reassure her…over and over…”soon, soon, soon”.</em></p>
<p><em><a href="http://erikakate.org/wordpress/wp-content/uploads/2009/11/p4160085.jpg"><img class="alignleft size-medium wp-image-1152" title="p4160085" src="http://erikakate.org/wordpress/wp-content/uploads/2009/11/p4160085-266x200.jpg" alt="p4160085" width="266" height="200" /></a>When she’s settled and calm, I look out at the city and think about some of the many things that I miss….</em></p>
<p><em>The dog, barking like crazy when someone comes to the door.<br />
Looking out the window and seeing the deer eat the hosta plants in the back yard.<br />
The sound of the alarm clock.<br />
The way the bed feels when I first lay down and the mattress feels cold.<br />
Watching the TV at night in my bed…for 5 minutes…before falling asleep.<br />
Toasting a bagel.<br />
Hearing the sound of a lawn mower on a Saturday morning real early.<br />
Looking through the mail at the end of the day.<br />
Sitting at the kitchen counter with the kids eating guacamole.<br />
Shopping at the supermarket.<br />
Planning a meal…and cooking it…and eating it!<br />
A bathroom that I can step on the floor with bare feet.<br />
A place at night that, when ready for bed, can be made dark and quiet.<br />
A morning where I can sit up in bed and feel at peace and well rested.</em></p>
<p>These things that I missed are truly some of the things in life to be thankful for.  They are the type of things that we easily take for granted.  They are the small things.  What our family has also learned is gratitude of our friends, neighbors and complete strangers.  We learned that the people around us truly make us who we are. They are the invisible arms that hold you up when you feel you can’t stand anymore.  Through our situation I have seen such wonderful acts of kindness that I can’t help but feel hopeful for our future.   Our family has vowed to pay our gratitude forward in anyway we can.  I fear we could spend the rest of our lives doing so and never repay the deeds of those that sent love and encouragement.</p>
<p>For us, Thanksgiving has new meaning.  We will still enjoy our dinner with loved ones, but we will celebrate life and love, be thankful for those that have touched our lives and pause to take in the simplicity of the meaning of the day…  unending gratitude for all things, big and small.</p>
<p><strong><a href="http://erikakate.org/wordpress/wp-content/uploads/2009/11/shieldshhh.jpg"><img class="alignleft size-medium wp-image-1153" title="shieldshhh" src="http://erikakate.org/wordpress/wp-content/uploads/2009/11/shieldshhh-300x200.jpg" alt="shieldshhh" width="300" height="200" /></a>How our story begins</strong></p>
<p>In April of 2008 our journey began.  It was the week before Lauren&#8217;s 8th birthday.  Lauren was becoming increasingly tired.  I also noticed that her abdomen was a bit distended.  I had no idea that these symptoms would continue to worsen as the days went on.  On April 15th, two days after her birthday, she was admitted into Westchester Medical Center.  At the time they did not know what was wrong.  What they did know was that there  was not only fluid in her stomach, it was in her lungs, rib cage and surrounded her heart.  Lauren was in the midst of heart failure.</p>
<p>This was hard for us to understand.  You see, our family for the most part, was always healthy.  We hardly kept Tylenol in the house.  T hear that our normally active and healthy child had heart failure was a shock to say the least.</p>
<p>We transferred Lauren to Morgan Stanley Children&#8217;s Hospital on April 20th, 2008, after we were told that Lauren had cardiomyopathy.  We were hearing great things about the hospital and wanted to give Lauren the best chance to get better.  Lauren stayed at Columbia for 3 months while she was given high doses of steroids to try to heal her heart.  They made no promises of how it would turn out.  We were told one-third of the cases get better, one-third stays the same, and one-third gets worse.  There was no telling where it was that she would end up.  Of course, we all wanted her to be in the one-third that got better but honestly, her heart had gotten a little stronger over the three months to the point where if it stayed the same, she would be able to live a functioning life.  That would have been ok, too.</p>
<p>Lauren did enjoy some time at home.  She took lots of medication and visited Columbia for check ups every 3-4 weeks.  I noticed at Christmas that she did not seem well.  She was starting to get sick in the mornings before school.  Many mornings she would make it to school only to get there and get sick in the nurse&#8217;s office.  On January 9th, 2009, the school nurse called me to say that Lauren was very sick and needed to be picked up.  I could hear panic in her voice.  When I got to the school Lauren looked as white as a ghost.  I took her immediately to Columbia to get checked.  When the doctor looked at her he confirmed that her heart failure had returned.  She needed to be admitted.</p>
<p>She was managed initially with IV steroid medication again.  This time, however, they were not working.  Lauren was getting worse by the day.  On February 3rd, Lauren was put on the Heart Transplant wait list with the highest status.  Lauren needed a new heart.  The days waiting seemed so long.  Lauren was getting weaker and was constantly getting sick.  At one point she sat with a basin on her lap and told me that she wished her new heart would come because she did not think that her old heart was “going to make it”.</p>
<p>Her instincts were correct.  On March 5th, she needed ot be placed on cardiac and respiratory life support.  Her heart was not going to be able to wait.  During the time she was on cardiac support (Bi-Vad) she was held in a drug induced coma.  These were very hard times for our family.  It was particularly difficult for our son Brandon was is 14 years old.  Lauren did not handle the Bi-Vad machine very well.  She continually bled and needed transfusion after transfusion so she did not bleed to death.  On the morning of March 18th we were preparing for an exploratory heart surgery to try to stop the bleeding.  At 3 pm that same day we received word that Lauren&#8217;s donor had finally been found.  Lauren would get her heart&#8230;in the nick of time.</p>
<p>On the morning of March 19th Lauren came off the elevator from her transplant surgery and looked so beautiful.  Her face and arms had a warm pink color that I was not used to seeding.  We were having our girl back finally.  My husband, son and I were delighted.</p>
<p>It took days for Lauren to wake up after they stopped the sedation.  She remained on respiratory support and kidney dialysis for days.  Sometime during this time she suffered a stroke.  We did not know this had happened until after she woke up and had seizures two weeks later.  The combination of life support, malnutrition, and stroke made her extremely weak.  She needs lots of physical therapy.</p>
<p><a href="http://erikakate.org/wordpress/wp-content/uploads/2009/11/p90800781.jpg"><img class="alignleft size-medium wp-image-1154" title="p90800781" src="http://erikakate.org/wordpress/wp-content/uploads/2009/11/p90800781-150x200.jpg" alt="p90800781" width="150" height="200" /></a>We spent two weeks at Blythdale Children&#8217;s Hospital in Valhalla for rehabilitation before coming home.  Lauren currently goes to out-patient therapy at Helen Hayes Hospital three days a week.  When she first came home, she could not stand, walk or lift her arms above her head.  She worked all summer on physical therapy.  When she wasn&#8217;t at Helen Hayes she was at Morgan Stanley Children&#8217;s Hospital having clinic visits.  Currently, she goes every three weeks for check ups and has a biopsy monthly.  We are blessed that her new heart shows no signs of rejection.</p>
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		<title>Friends of EKF - Mark and Melissa Kisner, Parma, Ohio</title>
		<link>http://erikakate.org//2009/10/07/friends-of-ekf-mark-and-melissa-kisner-parma-ohio/</link>
		<comments>http://erikakate.org//2009/10/07/friends-of-ekf-mark-and-melissa-kisner-parma-ohio/#comments</comments>
		<pubDate>Thu, 08 Oct 2009 02:43:52 +0000</pubDate>
		<dc:creator>Rich Maynard</dc:creator>
		
		<category><![CDATA[Featured Content]]></category>

		<category><![CDATA[Friends of EKF]]></category>

		<guid isPermaLink="false">http://erikakate.org//?p=1091</guid>
		<description><![CDATA[

In late Summer, 2002, Melissa Kisner, from the Cleveland suburb of Parma, Ohio, was entering the final weeks of her third pregnancy. Her first and second trimester had passed uneventfully, but late in her third trimester, her obstetrician was growing concerned about the apparent small size of the baby she was carrying. A detailed ultrasound [...]]]></description>
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<div id="attachment_1089" class="wp-caption alignleft" style="width: 276px"><a href="http://erikakate.org//category/friends-of-ekf/"><img class="size-medium wp-image-1089" title="mark-kisner-3" src="http://erikakate.org/wordpress/wp-content/uploads/2009/10/mark-kisner-3-266x200.jpg" alt="Mark and the Berlin Heart" width="266" height="200" /></a><p class="wp-caption-text">Mark and the Berlin Heart</p></div>
<p>In late Summer, 2002, Melissa Kisner, from the Cleveland suburb of Parma, Ohio, was entering the final weeks of her third pregnancy.<span> </span>Her first and second trimester had passed uneventfully, but late in her third trimester, her obstetrician was growing concerned about the apparent small size of the baby she was carrying.<span> </span>A detailed ultrasound at 38 weeks revealed a cause for concern.<span> </span>Melissa’s baby, a boy to be named Mark, was in heart failure due to a critically stenosed aortic valve.<span> </span>Melissa was frightened about the finding but was comforted to know that a team of cardiologists at Rainbow and Babies Children’s Hospital in Cleveland, Ohio was up for the challenge.<span id="more-1091"></span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">Mark Kisner was born on September 11, 2002, and as expected, had a critical lesion on one of his heart valves.<span> </span>Doctors performed a balloon procedure in the cath lab when Mark was 5 days old as a temporary fix to open the valve further and allow Mark’s heart to function better.<span> </span>The initial procedure was a success and Mark was allowed to go home within a couple of weeks.<span> </span>At five months old, Mark required a major open heart surgery to restructure his valvular anatomy. The surgery was again performed at Rainbow and Babies Children’s Hospital, and Mark did very well.<span> </span>There were no complications.<span> </span>Doctors told Melissa that Mark would need another major open heart surgery when he reached 4 years old to optimize the effect of the first surgery, and make some structural changes that would allow his heart to grow with him into adulthood.<span> </span>That surgery was performed in the fall of 2006.<span> </span>It was complex, but successful, or so his doctors thought.</span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">In the Spring of 2008, when Mark was 5 years old, he began showing signs of fatigue and frequent bouts of bronchitis and pneumonia.<span> </span>A more thorough work up revealed Mark was actually in heart failure once again.<span> </span>Doctors adjusted some of his medications and asked Melissa to bring him back for a heart catheterization a month later.<span> </span>The cath study revealed that Mark was in severe heart failure and had developed some moderate pulmonary hypertension (high pressures in the blood vessels leading from the heart into the lungs) as a result.<span> </span>His doctors recommended a heart transplant, and Mark was listed as a status 2A transplant candidate in September 2008.<span> </span>Because doctors felt Mark’s heart failure was stable, Mark was allowed to wait at home for a new heart to become available.</span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">While waiting at home for the call, this adorable redhead and freckle-faced little guy enjoyed the usual musings of a typical 6 year old boy.<span> </span>He enjoyed playing with his brothers, Martin, 12, Matthew, 10, and baby brother Ashton.<span> </span>He also enjoyed collecting Webkins, and being very creative with paint and crayons.<span> </span></span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">Several months passed and still, no call that a donor heart had been located for Mark.<span> </span>In April 2009, the transplant team wanted to have another look at Mark’s heart function.<span> </span>A routine heart cath revealed progression of both his heart failure and his pulmonary hypertension.<span> </span>In fact, the blood pressure in Mark’s pulmonary vessels had become so high, that he was no longer a candidate for a heart transplant.<span> </span>He was taken off the transplant list and a trial of intravenous prostacyclin medications was initiated in an effort to reduce Mark’s pulmonary hypertension and help him qualify once again for the heart transplant he so desperately needed.<span> </span>By the end of May 2009, the medications did not appear to be working, and cardiologists in Cleveland recommended that Mark be evaluated for a heart-lung transplant at the University of Pittsburgh Children’s Hospital.</span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">For various reasons, Mark’s work-up in Pittsburgh didn’t commence until late July 2009.<span> </span>It was thought at the time that because of his pulmonary hypertension, a heart-lung transplant was his only real option.<span> </span>He was running out of time.<span> </span>To Melissa’s horror, pre-transplant testing revealed that Mark’s immune system was too revved up.<span> </span>His antibody levels were naturally elevated and were likely to attack a new set of donor lungs with great intensity to the point where a lung transplant was deemed out of the question.</span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">Mark was running out of options.<span> </span>The transplant doctors in Pittsburgh gave Melissa, now a divorced mother of 4 boys, only a couple of options.<span> </span>They suggested she consider taking Mark home without further interventions or study, where it was suspected that his disease would claim him within 3 months.<span> </span>Or, she could choose an experimental route- using an assist device to potentially help rest Mark’s heart and lungs in hopes that he would eventually qualify for a heart transplant once again.<span> </span>Melissa took a week to think about it.<span> </span>“It was a very difficult decision.<span> </span>I thought seriously about the first option.<span> </span>He had been through so much by that time, and there was no certainty that it would work.<span> </span>If it did, that meant life for Mark.<span> </span>If it didn’t, it meant Mark would live on the machine the rest of his days until it malfunctioned.<span> </span>It was a terrible decision to have to make” states Melissa.</span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">But make it she did.<span> </span>She decided to give Mark a chance at life.<span> </span>On August 5<sup>th</sup>, 2009, Mark was taken into the operating room at UPMC Children’s Hospital and had a controversial assist device known as the Berlin Heart implanted into his chest.<span> </span>The device was developed in Europe in the early 2000’s and has seen widespread use in European heart centers since that time.<span> </span>However, the device has yet to receive FDA approval for use in the U.S.<span> </span>Mark’s transplant doctors had to petition the FDA to gain approval to implant the device in Mark in hopes of helping him qualify for heart transplant.</span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">The Berlin Heart was cumbersome and bulky, and the apparatus dwarfed little Mark as he lay post-operatively in his PICU bed.<span> </span>While on the device, Mark was uncomfortable and irritable.<span> </span>He bled a lot from around the tubes.<span> </span>He received many, many blood transfusions and even arrested once due to the formation of a large blood clot around his heart.<span> </span>“I was beginning to think that maybe I had made the wrong decision to go this route.<span> </span>He was depressed and he lost that little glimmer in his eyes, almost as if he was giving up,” said Melissa.<span> </span>After two weeks on the Berlin Heart, Mark’s doctors listed him again for heart transplant; this time as a status 1A- the highest priority.<span> </span>A week later, Mark’s heart was studied in the cath lab, and it was noted that the Berlin Heart had worked beautifully to reduce his pulmonary pressures by 50% or better.<span> </span>He was now a good candidate for a heart transplant.<span> </span>Melissa was shocked and overjoyed.<span> </span>“Everyone was so happy.<span> </span>This was our first bit of good news in many months.<span> </span>I called everyone I knew, and I couldn’t stop crying.”</span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">Approximately one week later, at 12:15 am on September 5<sup>th</sup>, 2009, just 6 days before Mark’s 7<sup>th</sup> birthday, Melissa received the phone call for which she had waited nearly a year.<span> </span>A donor heart had been located for Mark.<span> </span>Mark went into the OR at around 10 am that morning to receive his new heart.<span> </span>It started right up and began beating beautifully.<span> </span>He returned to the OR on the first post-operative day to control some bleeding, but beyond that has done remarkably well.<span> </span>He was discharged from the PICU over the weekend and is now in the step-down unit awaiting discharge from the hospital.<span> </span>It appears that Mark and Melissa are well on their way to a happy ending. </span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">The past several months, from April to September 2009, have been a blur of unanticipated events and crises, one right after the other.<span> </span>Melissa struggled to keep it all together and take care of her family while Mark was hospitalized getting the care and treatment he required.<span> </span>Her older boys, Martin and Matthew, were able to stay back in Ohio with grandparents throughout much of the ordeal.<span> </span></span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">In April, when things started heating up for Mark, Scott, Melissa’s boyfriend of 3 years lost his job back in Cleveland.<span> </span>It seemed he was taking too much time off of work to watch little Ashton, the couple’s one year old little boy.<span> </span>Melissa needed to be available to take Mark to his doctor appointments and remain with him in the hospital.<span> </span>Because young siblings of sick children are not allowed in the PICU, the task of caring for little Ashton throughout the day fell to Scott.<span> </span>His employer was less than understanding and soon, Scott was out of work.<span> </span>By the time Mark’s hospitalization in Pittsburgh began, the couple had experienced a significant drop in income due to missed work, and had incurred a large increase in additional expenses owing to Mark’s condition.<span> </span>Scott took a temp job in Pittsburgh to keep some money coming in and allow him to be near Mark, Melissa, and Ashton.<span> </span>But funds were still very tight. </span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">In early August, a social worker from UPMC Children’s Hospital contacted the Erika Kate Foundation in search of assistance for the family.<span> </span>The social worker had identified a daycare program in Pittsburgh near the children’s hospital, that could look after Ashton during the day and allow Melissa to be with Mark in the PICU.<span> </span>There were no programs in place to help subsidize the expense of daycare, and Melissa was in no shape financially to come up with the funds herself.<span> </span>The daycare program had been experiencing some financial hardships itself owing to a setback in the local economy.<span> </span>For several weeks, EKF happily intervened on behalf of the family and facilitated this arrangement.<span> </span>Ashton received great care during the day when Melissa needed to be with Mark, and Scott was able to generate some income to keep the bills paid at home.<span> </span>EKF also helped by making a car payment when Melissa was falling behind financially during the midst of their storm.<span> </span></span></p>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">We wish Mark and his family all the best as Mark continues his recovery and begins to transition back home to Ohio.<span> </span>Please keep Mark in your prayers.</span></p>
<div id="attachment_1090" class="wp-caption aligncenter" style="width: 276px"><img class="size-medium wp-image-1090" title="mark-kisner-2" src="http://erikakate.org/wordpress/wp-content/uploads/2009/10/mark-kisner-2-266x200.jpg" alt="Mark and Melissa" width="266" height="200" /><p class="wp-caption-text">Mark and Melissa</p></div>
<p class="MsoNormal"><span style="font-size: 10pt; font-family: Helvetica;">RM </span></p>
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		<title>Prayers and Support Needed for Little Wyatt</title>
		<link>http://erikakate.org//2009/10/01/prayers-and-support-needed-for-little-wyatt/</link>
		<comments>http://erikakate.org//2009/10/01/prayers-and-support-needed-for-little-wyatt/#comments</comments>
		<pubDate>Fri, 02 Oct 2009 03:21:43 +0000</pubDate>
		<dc:creator>Rich Maynard</dc:creator>
		
		<category><![CDATA[Featured Articles]]></category>

		<category><![CDATA[Featured Content]]></category>

		<guid isPermaLink="false">http://erikakate.org//?p=1125</guid>
		<description><![CDATA[Do you remember Little Wyatt Lynas, 3, from Viola, Idaho?  Wyatt was featured in last year’s year end newsletter.  This week, Wyatt’s parents learned he will need to return to Children’s Hospital Boston for another major heart surgery on October 23, 2009.   Wyatt&#8217;s mitral, tricuspid, and aortic valves have been leaking, and need to be replaced.  Doctors [...]]]></description>
			<content:encoded><![CDATA[<p class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: &quot;Helvetica&quot;,&quot;sans-serif&quot;; font-size: 10pt;"><img class="alignleft size-thumbnail wp-image-1128" style="margin: 5px;" title="wyatt-lynas-3" src="http://erikakate.org/wordpress/wp-content/uploads/2009/10/wyatt-lynas-3-150x150.jpg" alt="wyatt-lynas-3" width="150" height="150" />Do you remember Little Wyatt Lynas, 3, from Viola, Idaho?  Wyatt was featured in last year’s year end newsletter.<span style="mso-spacerun: yes;">  </span>This week, Wyatt’s parents learned he will need to return to Children’s Hospital Boston for another major heart surgery on October 23, 2009.<span style="mso-spacerun: yes;">  </span><span style="mso-spacerun: yes;"> </span>Wyatt&#8217;s mitral, tricuspid, and aortic valves have been leaking, and need to be replaced.  Doctors in Boston plan to replace his mitral and tricuspid valves with mechanical valves.<span style="mso-spacerun: yes;">  </span>In addition, they’ll also to perform the Ross procedure, which involves taking the pulmonary valve and making it into the aortic valve and then using a cadaver valve for the pulmonary valve.  Without this surgery, Wyatt&#8217;s valves could give out at any time and put him in a more critical situation.  </span></p>
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The Lynas family are requesting your prayer support as they travel back to Boston.<span style="mso-spacerun: yes;">  </span>They are so thankful to the Foundation and all the wonderful people out there – people that they’ve never met - <span style="mso-spacerun: yes;"> </span>who are willing to pray for their sweet little guy.<span style="mso-spacerun: yes;">  </span>Prayer is what has gotten them this far; and they are thankful to everyone who has supported their family along the course of their journey.<span style="mso-spacerun: yes;">  </span>  </span></p>
<p class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: &quot;Helvetica&quot;,&quot;sans-serif&quot;; font-size: 10pt;"> </span></p>
<p class="MsoNormal" style="margin: 0in 0in 12pt;"><span style="font-family: &quot;Helvetica&quot;,&quot;sans-serif&quot;; font-size: 10pt;">Monique, Wyatt’s mom, says, “I have met several kiddos and parents with mechanical hearts waiting for a transplant; and that is a long hard road.  We just pray to get through today and try to remember that broken heart or not, none of us are promised tomorrow.” </span></p>
<p class="MsoNormal" style="margin: 0in 0in 12pt;"><span style="font-family: &quot;Helvetica&quot;,&quot;sans-serif&quot;; font-size: 10pt;">You are invited to follow along directly with Wyatt’s progress via his Care Page website:</span></p>
<p class="MsoNormal" style="margin: 0in 0in 12pt;"><strong><span style="text-decoration: underline;"><span style="font-family: &quot;Helvetica&quot;,&quot;sans-serif&quot;; font-size: 10pt;"><a href="http://www.carepages.com/carepages/Wyattlynas/updates/2386192?client_code=chb&amp;ipc=mur"><span style="color: #800080;">http://www.carepages.com/carepages/Wyattlynas/updates/2386192?client_code=chb&amp;ipc=mur</span></a></span></span></strong></p>
<p class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: &quot;Helvetica&quot;,&quot;sans-serif&quot;;"><span style="font-size: small;"> </span></span></p>
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		<title>Team EKF 2009</title>
		<link>http://erikakate.org//2009/09/29/team-ekf-2009/</link>
		<comments>http://erikakate.org//2009/09/29/team-ekf-2009/#comments</comments>
		<pubDate>Wed, 30 Sep 2009 03:08:16 +0000</pubDate>
		<dc:creator>Rich Maynard</dc:creator>
		
		<category><![CDATA[Featured Content]]></category>

		<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://erikakate.org//?p=1051</guid>
		<description><![CDATA[
On Sunday, September 27th, 2009, more than 90 runners and walkers turned out to participate in the recent Team EKF/Quad Cities Marathon event in Moline, Illinois.  The team wore Erika Kate Foundation t-shirts and helped raise awareness for the work of the Foundation in the Quad Cities area.  The weather was beautiful and everyone had [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft size-thumbnail wp-image-1060" style="margin: 5px;" title="Team EKF 2009" src="http://erikakate.org/wordpress/wp-content/uploads/2009/09/erikakateqcmarathon09013-150x150.jpg" alt="Team EKF 2009" width="150" height="150" /></p>
<p>On Sunday, September 27th, 2009, more than 90 runners and walkers turned out to participate in the recent Team EKF/Quad Cities Marathon event in Moline, Illinois.  The team wore Erika Kate Foundation t-shirts and helped raise awareness for the work of the Foundation in the Quad Cities area.  The weather was beautiful and everyone had a great time cheering their teammates on as they participated in various events.  A big THANKS goes out to Joe Moreno and his crew of volunteers who helped make this a special event for the Erika Kate Foundation.  If you missed it, plan on joining us next year.</p>
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		<title>A Mother&#8217;s Heart - 9/16/2009 - Maintaining a Healthy Heart</title>
		<link>http://erikakate.org//2009/09/16/a-mothers-heart-9162009-maintaining-a-healthy-heart/</link>
		<comments>http://erikakate.org//2009/09/16/a-mothers-heart-9162009-maintaining-a-healthy-heart/#comments</comments>
		<pubDate>Thu, 17 Sep 2009 03:16:07 +0000</pubDate>
		<dc:creator>Traci Maynard</dc:creator>
		
		<category><![CDATA[A Mother's Heart]]></category>

		<category><![CDATA[Featured Articles]]></category>

		<guid isPermaLink="false">http://erikakate.org//?p=1018</guid>
		<description><![CDATA[
In my neighborhood Bible Study, there are four of us who gather each week to study God&#8217;s word and reflect on His work in our lives. This past month, we watched a DVD segment from Rick Warren about maintaining our hearts - physically, emotionally, and spiritually. I thought it had some simple insights to remind [...]]]></description>
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<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;">In my neighborhood Bible Study, there are four of us who gather each week to study God&#8217;s word and reflect on His work in our lives.<span> </span>This past month, we watched a DVD segment from Rick Warren about maintaining our hearts - physically, emotionally, and spiritually.<span> </span>I thought it had some simple insights to remind us all about caring for our hearts.<span> </span></span></p>
<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;">Three habits that refresh a loving heart physically - getting plenty of rest (Psalm 127:2), eating a balanced diet (Psalm 119:73) and getting regular exercise (1 Corinthians 6:20).<span> </span>It is important to set aside one day each week to rest, relax and refresh spiritually; for many of us, this comes on Sunday.<span> </span></span></p>
<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;">Three habits that recharge us emotionally are - solitude (Mark 6:31), recreation (Luke 7:34) and laughter (Proverbs 17:22).<span> </span>It is valuable to make time to be by ourselves.<span> </span>I think that is one reason I like running so much.<span> </span>It also replenishes me emotionally and spiritually while challenging me physically.</span></p>
<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;">Lastly, there are three habits that renew us spiritually - daily quiet time, small group, and worship.<span> </span>These habits are essential for our spiritual growth to occur and for our souls to be cared for.<span> </span>Rick Warren made a comment that a Christian without a group is like an orphan.<span> </span>We need each other to hold one another accountable, to inspire each other, and encourage one another.</span></p>
<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;">&#8220;The quality of your relationship to God determines the quality of every other relationship you have.&#8221; - Rick Warren<br />
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<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;"><!--[if !supportEmptyParas]--> <!--[endif]--></span></p>
<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;">May you make efforts every day to maintain a healthy heart physically, emotionally, and spiritually.</span></p>
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<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;">Maintaining a Healthy Heart<br />
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<p class="MsoNormal"><span style="font-size: 10.5pt; font-family: Helvetica; color: black;"><span> </span>- <em>from Rick Warren&#8217;s 40 Days of Love series</em></span></p>
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