My name is Leah and my son’s name is Tylor. Tylor was born with 1p36 duplication. He is 20,000 base pairs away from any others on record to-date. He is case one of one and we have recently celebrated 10 amazing years with my little man!
Tylor was given a low chance of survival after discovering two congenital heart defects in utero. It was not long after this discovery, our physicians realized he wasn’t growing nor was I producing enough amniotic fluid. After almost running completely out of the amniotic fluid, Tylor was born underdeveloped and premature at 7 weeks via emergency c-section.
Tylor was quickly transported to Children’s Hospital of Philadelphia (CHOP) for his first heart surgery and he struggled. His lungs collapsed, he was unable to gain weight, developed an infection – but, he fought. He fought hard! We were able to go home when he was about 2 months old, only to find ourselves back a week later at CHOP with congestive heart failure.
Tylor recently underwent another surgery, one of many he has experienced in his short life. His surgery went very well with a little hiccup in recovery due to a major asthma attack from anesthesia. He recovered well after they got him stable and breathing again. A pulled tube the next morning had us rushing back to the hospital, but has successfully kept the other tube in for over 2 months. His one eye is recovering well and we look forward to fitting him into glasses soon and removing the tube.
Aside from all of his continual medical experiences, Tylor continues to fight and grow. He is strong-willed, inquisitive and generally a happy guy. I have been so very blessed to have been given the chance at 10 amazing years, years many doctors believed I would never have with Tylor. I cherish each and every moment with him – even the rough ones. I truly believe now that we will see many, many more years to come.
Research and medicine have come so far, and I thank the medical community and organizations like the R.A.R.E. Project that support the much-needed research for my 10 miracle years!
A DISEASE MAY BE RARE, BUT HOPE SHOULD NOT BE.