Please help Adam battle a rare genetic disease

We’re all so proud of Adam and the progress he’s made in the almost six years since he arrived and we were introduced to Cornelia De Lange Syndrome and the many obstacles it has placed in his life’s path. We thought he might never hear - but his growth, his hearing aids, and the insertion of grommets has made sound an enjoyable part of his life. We thought he might never walk, but he mastered that at age three. We were worried he might find his challenges overwhelming but he continues to wake up every day raring to go with a smile on his lovely face.

For all these achievements we are thankful to the medical teams, therapists and special needs teachers who have poured so much effort into Adam, and for the Givealittle donations that have helped him on his way.

For all he has achieved, Adam still has many challenges, the biggest of which are eating and talking. For a normal child these are the most basic of functions, mastered very early in life. For Adam, though, they are a tremendously complicated brain process. Chewing, swallowing, speaking and all related functions require a great deal of mental and physical coordination. Although Adam is primarily fed through a pump into his stomach, we have gradually been able to introduce purees. After five years of pump feedings and never eating or drinking via his mouth, he clearly enjoys real food, but every meal time takes around 90 minutes of one-on-one spoon feeding.

Any donations will be gratefully received and will be used to pay for additional therapists and support personnel to help Adam and his family master this next important phase of his development.

Thank you