(posted February 21, 2021)
Zane was born premature in Dallas, Texas on December 22, 2015. Unfortunately, he had a lot of struggles in the beginning of his young life and spent the first nine months of his life in the hospital. Zane was one month old when his doctors discovered that his heart was abnormally large. He also had a heart murmur and difficulty breathing. When Zane’s newborn screen came back abnormal, the doctors diagnosed him with 22q11.2. He had to have open-heart surgery immediately. Finally, after nine months, Zane was released from the hospital with a trach and gastrostomy tube (G-tube). Although it was hard at first, he eventually thrived at home! Zane’s trach was removed when he was two years old and he is now eating purees by mouth.
Until recently, Zane had never been able to swallow properly or to eat any amount of food without a feeding tube. By the time he was four years old, his parents thought he may never eat without the tube. “It was ok if he never did,” says his mom, Kaitlyn. “He had the feeding tube and it was not a big deal to feed him that way.” Everything changed this past summer when Zane went to an inpatient facility for intensive therapy. He worked really hard and learned how to eat by his mouth. Zane now eats purees every day and hasn’t used the feeding tube in several months! “The fact that he built up his mouth muscles and did the work is so incredible to us!” exclaims Kaitlyn. “We are so excited!” Zane’s parents hope he can have the feeding tube removed one day, but if it doesn’t happen, that’s ok.
Zane LOVES school, he has a personal nurse at school that helps him with all of his needs. Zane also loves people and animals. Kaitlyn says he is very social and loving. Although Zane tires easily, he enjoys running and playing especially games and with cars. Zane is a happy child.
Kaitlyn wants children and families living with 22q to know that there is a whole community that spreads awareness and love. “You are not alone!” she says.