Open Letter to Social Workers

To all  Pediatric Cardiac Social Workers,

Throughout Erika’s journey, we traveled near and far in an effort to get her some of the best medical care available.  She was diagnosed at the University of Iowa Children’s Hospital, received a second opinion and more advanced care at St. Louis Children’s Hospital, and eventually received a heart transplant at Columbia University Medical Center in NYC.  In the process, we observed several trends:

1.  Numerous local and regional programs exist to help families of children with various health problems.

2.  Compared to many disease processes, resources available to families of children with heart disease appeared to be lacking.

3.  Many local and regional programs are in place but not particularly well funded.  These resources are easily exhausted, and in some areas, are non-existent.  If a family is fortunate enough to be at a center with extensive family resources, they’re going to be taken care of.  If a family is at a center with very limited family resources, they’re on their own, and oftentimes will suffer significant financial hardships, exhausting their life savings and net worth in an effort to keep their financial heads above water in the midst of a medical crisis.

4.  There seems to be a need for a central, national, umbrella organization to which families in the midst of a medical crisis can appeal for help in keeping up with some of the burdens related to their child’s condition.

We would like to be that organization.  We want to become a national assistance program for families of children with life-threatening heart conditions experiencing a heart related medical crisis.  Done well, we believe this model could expand to envelop and serve other life-threatening illnesses and medical crises as well.

We also see EKF becoming a clearinghouse of sorts for putting families in need in touch with local  programs dedicated to serving people in their situation.  And where local and regional resources are exhausted or non-existent, EKF would like to stand in the gap on behalf of these families.

It’s a HUGE undertaking.  We’ll need lots of help.  We ask for your assistance and cooperation in bringing it to fruition.  Here’s what YOU can do:

1.  Provide us with your contact information so we can add your name and center to our database.  Click here to submit your information.

2.  Help us with the development of a central database on resources for children with complex cardiac issues, please forward the names and contact information of local, regional, or national organizations that you currently use to assist your families.  Let us know the reasons you typically consult these resources, and the type of assistance they can provide to your families.  Contact information (i.e. a web link, email address, phone numbers, etc.) would be helpful.  We will catalog this information according to geographic region and make it available to families in need.  This will additionally help us differentiate one center from the next in terms of its local programs available to serve family needs during a heart related medical crisis.  This information can be submitted to us via email at info@erikakate.org .

3. Take full advantage of your available resources in helping cardiac families.  Send us your referrals of families in need of additional assistance beyond what your local programs can serve.  We’ll do our best to help them in a significant way.

Thank you for your help and support.

Sincerely,

Rich and Traci Maynard

Founders

Erika Kate Foundation