Asher’s Journey with Treacher Collins Syndrome
Asher was born April 20th, 2013 in Magee Womens Hospital of UPMC. No one suspected he’d have any issues despite early pregnancy complications that required extra monitoring. When he was delivered, the doctor noticed his jaw was alarmingly small and he had no external ears. An exam was completed in Magee’s NICU and he was transferred in the night to Children’s Hospital of Pittsburgh after several failed intubation attempts and incidents of respiratory distress. He remained in the NICU for 6 weeks for testing and surgical procedures. When he was four days old, he had a tracheostomy (artificial airway) placed. After weeks of struggling with oral feeds from special bottles he had gastrostomy (feeding tube) placed. Genetic testing confirmed he has Treacher Collins Syndrome (TCS). TCS is a condition that affects the development of facial structures in utero. Signs include a small jaw, absent ears, hearing loss, cleft palate, abnormally shaped eye sockets, and incomplete cheek bones. Asher has varying degrees of all of these problems.
Asher was discharged home in July of 2013. He has had several emergency room visits and unexpected hospital stays related to his tubes and susceptibility to illness in addition to multiple specialist appointments nearly every month. He receives 16 hours of home nursing care a day and 4 therapies per week through Early Intervention (PT, OT, Speech, and Hearing). He is otherwise becoming a typically developing toddler who is beginning to walk, communicate (verbally and through sign language) and assert his independence. The future looks bright but the road won’t be easy. People with TCS can have upwards of 20 surgeries from infancy to adolescence. In August of 2014 he had his cleft palate repaired. He will soon have surgery on his right eye. He continues to be unable to take food by mouth though he is very interested in the process of eating. The team of physicians at Children’s plan for his next set of surgeries to start between the ages of 4 and 5. They will remove ribs to form parts of his jaw to hopefully allow for him to breathe and one day eat normally. His hearing aids (currently worn on a headband) will be surgically implanted at the base of his skull.
DonationsSee top donations
- Bill and Giselle Hefele
- Clay & Marie Yeager
- Ed and Anne Gasperich
- Joan Tracy
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more