Remembering Ariyan Ferdinand
This month EKF is remembering Ariyan Elle-Marie Ferdinand, who would have been 4 years old on August 16th. Ari had been treated for dilated cardiomyopathy since she was 4 months old. Ari passed away on April 20, 2009 as she was waiting to receive a heart transplant at Children’s Hospital at Montefiore, in Bronx, NY.
In the aftermath of Ari’s passing, her family is trying to focus on the good memories, the way Ari lived with such spirit, and how she touched all those around her. Ari’s mother, Aschelle, says “We laugh and talk about her all the time and we believe that she really knew how to live.” They always called her ‘the trooper’. Ari didn’t want to be different, so she just kept going, not slowing down, always doing exactly what her brothers were doing. She was an outgoing, positive, and happy little girl who loved Elmo, Dora the Explorer, and dancing. Even when hospitalized, on good days she was talking with everyone and reminding the nurses what to do.
Her brothers Che (9) and Cy (6) adored their sister. Cy, who was only 2 when Ari was born, was by her side every day of her life. He and Ari always played together and looked out for each other. The family referred to them endearingly as the “Newlyweds” because they wouldn’t do anything without each other. Cy help keeps the memory of Ari alive as he talks about her constantly, about what she would think, what she would do, what would make her laugh. Keeping memories alive is hard — you don’t want to forget, and yet it is painful to remember. Che, the older brother is internalizing his loss, holding close to the memories and his emotions. Within minutes of Che & Cy being told that their little sister had passed away, they asked that her room become a museum of all things Ari. The walls are the colors of Elmo, Dora, and Sponge Bob, her favorites. The room is filled with Ari mementos.
When Ari was only a few months old, her mother, Aschelle, knew something was wrong because Ari became extremely fussy and wouldn’t eat. Although family told her that it was normal for a little girl to eat less than her brothers had at that age, Aschelle knew better. She took Ari to the pediatrician who then directed her to take Ari to the emergency room as the doctor had detected a murmur. After Dr. Montoya, the pediatric cardiologist at Winthrop University Hospital on Long Island, diagnosed Ari with dilated cardiomyopathy she was transferred to Children’s Hospital of New York-Presbyterian (CHONY). Ari did well on the medication at CHONY and was soon transferred back to the local hospital in Long Island.
Ari’s care at Winthrop was overseen by her cardiologist who made sure home care nursing was available before she went home. Over the years, these home health nurses became like second mothers to Ari, and she & the family referred to these wonderful helpers as Ari’s ‘nursies’.
Ari’s dad Cyprian worked long hours during Ari’s illness to support the family, so his time with her was limited but precious. He was her favorite eating motivator and would get her to drink lots of Pediasure when no one else could, and he patiently persuaded her to love string cheese, one of the few things she would eat.
Aschelle’s sisters, mother, and sister-in-law, Rosie have been strong support during Ari’s illness. Andy, Aschelle’s younger sister, came to stay as soon as Ari became ill. Aschelle’s older sister, Amber, and Rosie, continue to talk to Aschelle almost daily, providing that shoulder to cry on and the support that a strong family can give. Aschelle’s mother came to stay with Ari in the hospital when Ari went to Montefiore in March 2009 for heart failure. She stayed by Ari’s side, night and day, keeping Aschelle aware of Ari’s condition and providing strength and comfort to Aschelle when she could not be there.
Aschelle’s message to parents in similar situations is to live with no regrets. Although Achelle had great hope that Ari would live to have a normal life, she chose to spend as much time as possible with Ari so that she would have no regrets. She also believes parents should listen to their heart, their gut instincts, and let their true feelings be heard with the doctors, nurses and the medical staff. These medical personnel are highly skilled, with the latest methods and the best equipment available. However, no one knows a child like the parents, and the parents’ voice should not be lost in the midst of the medical process.
The family will remember Ari on August 16th as a sweet angel who touched many lives, and whose spirit will live on in their hearts forever.
-CG
This made me cry and smile at the same time. She was sooooo beautiful, my little princess, I will miss her. Her memories will live on.
Love Mags
Dearest Ashelle…our loved ones never leave us..it is the physical body which leaves..once there is love ,memories will always be there..mags spoke about her so much that i knew how beautiful she was…believe in God and give thanks for such sweet memories..Charmaine
Oh, this is soo touching. I feel like I knew her too. My heart is so full. This is a sweet angel who will not be forgotten. Oh my God. Be strong Aschelle and family. Love Tryce
As one door closes another always opens. I’m sorry for your loss and send you hopeful thoughts for a new beginning and countless more blessings.
A butterfly flies beside us like a sunbeam, And for a brief moment its glory and beauty belongs to our world. But then it flies on again, and though we wish it could have stayed, we feel so lucky to have seen it.
Please love and comfort each other, as only time heals the fresh wounds of this great loss. Be jealous of the fact the Ariyan felt so much love till her calling. You all did a real good job of loving her and every sacrifice made was really worth it aschelle you have proved to be a true mother of her years. I am SORRY I DIDN’T GET TO MEET HER.
Love Always Berty
Ari affected me in a way that no other child that I hardly knew was able to. She seemed to look right through you and know your soul. Her immense angelic strength and beauty will be missed but let it help carry her mom, dad and brothers through the rest of their life’s journey and someday soon we will all come to be with her and enjoy the amazing character of Ariyan Elle-Marie.
Dear Aschelle, Cyprian, Che and Cy,
I think of all of you often. You are in my thoughts and prayers. What a beautiful tribite to Ari. She was definitely one very special little girl that lived life to the fullest. It is still shocking to me that she is no longer physically with us. Her smile will be with us always. The way she cared about her brothers will stay with me forever. She is a sister every brother would love to have. She would get excited if they were, and she would cry if they were - she cared deeply for them - even when she was rough housing with them!! I always enjoyed visiting your family. I always left smiling or laughing. Ari has touched soooo many lives in her few years with us- how blessed we are to have been part of it. Your little angel will live on in all of us. Take care of yourselves and enjoy all those special memories of her.
Love, Terri
Dear Aschelle, Cipri, Che and Cy,
It is nice to have this opportunity to remember Ari in such a special way. I’m glad that you are able to laugh and talk about her often. Having just lost my brother, I know firsthand the pain of losing a loved one and the comfort that fond and precious memories bring. I pray that God will continue to bless and keep you.
Love, Debbie
Ari was special and will always be reminded as the beautiful little girl that touched many lives. Aschelle,You are very strong and blessed.
May God continue to bless you and your family.
Elizabeth
Dear Ariyan, just as we became best friends you were asked to be an angel up above for all the little ones who are alone and wanted someone to comfort them. I know you are doing a great job. Brandon always ask about Ari and I am sure you whisper “I’m here” . You have touched our lives in so many ways. I have learnt many things from you. I feel blessed to have known you.
To Aschelle, Cipri, Che and Cy my arms and my home are always open to you.
Love
Barry
Ashee, Cyp, Che’ and Cy
I admire the courage it took to do this beautiful tribute to Wee Wee, Our hearts ache for all of you and her life cut short. But she taught us so much about strength, bravery, determination, and just how to live life to the fullest. To know Ariyan was to love her. We will forever keep her memory alive for Che’ and Cy as she certainly did and would have enjoyed as beautiful and loving sister relationship as I share with Cyp. Just know that we will always be there for you, and with you. As her favourite Uncle Lance said someday he WILL dance with her again.
Love, Aunty Rosie, Uncle Lance, Cousins Kale and Kieran
To the Ferndinands,
Thank you for the opportunity to have known such a beautiful, sweet, “ah-na-fair,” child. She was truly a gift. I am sorry that you had such a short time with her, but I know your wonderful memories of her will last your lifetime. I remember the last time she was at my house, running around with the boys, to look at her, you would never know how delicate she was. I will cherish these memories. May God bless and keep you. You are always in my thoughts and prayers.
Liliane
To all our family and friends who have been touched by our Ari,
We thank you for your thoughts and expressions of comfort as we remember a sweet little girl who came only for a while but touched us all with her smile.