Our story is one of love and healing. A story of our dearest baby boy, Everett Graft.
Those little grasping hands.
Everett was born very sick on 4/17/18. He was deprived of oxygen and diagnosed with Hypoxic Ischemic Encephalopathy (HIE). Though the reasons that caused him to be sick at birth are not entirely clear, we, and his medical team, were worried about his breathing, how strong his heart was, how his kidneys would recover and many other parts of his body. We remained hopeful when much of his body initially recovered, but it became clear that his brain sustained severe injury that he would not recover from. This made it difficult for him to breathe without life support and unable to swallow or gag on his own.
In addition, and unrelated to his birth injury, we had genetic testing done during the pregnancy and learned that we are both carriers of a recessive gene for a very rare and fatal neurological disorder, Metachromatic Leukodystrophy (MLD). We knew through amniocentesis that Everett received both of our genes and there was a good chance he would have the disease. But, because we knew about it early we were committed to monitoring him and pursuing early treatments to give him the best quality of life possible. Once Everett was born it was confirmed via testing that he did in fact inherit the disease, although we couldn’t be sure what form until symptoms developed. Due to his brain injury at birth we were told that it would be difficult to decipher whether symptoms he would exhibit would be a result of the genetic disorder or the birth injury and he would not be a candidate for any treatments that could help treat the disease in the future.
Everett was loved and exceptionally cared for by the entire team at Prentice Hospital, who we worked with to support him while maximizing his comfort, which was our main goal for his care. We spent each of the 36 days we had with him soaking up every moment - snuggling, talking, reading, singing and loving on him. He passed away peacefully on 5/23/18 with us by his side. We let him know it was okay to let go and that we would all be okay. He is no longer sick or in pain and has changed our lives forever. He will live on through us and by helping others through this foundation.
