Zaidyn is a sweet boy who gained his angel wings two months before his 4th birthday. He had AGS 1. After Zaidyn was born, he was rushed into Neonatal Intensive Care (NICU) for four months before the doctors diagnosed him. He went through a lot of tests! From the age of five months to two years old, he was a very irritable boy. We had no clue what to expect or how to help him because we knew nothing about AGS. There were a lot of sleepless nights.
Zaidyn was G-tube fed; initially he ate some baby food but after a couple of years he was switched to using J-tube only. He wasn't able to sit independently, stand or talk but went through a lot of physical therapy to help with his muscle tone and do some standing in his stander. He wasn't able to see very well out of his left eye but Zaidyn still loved being held, being rocked, looking at toys, listening to music, swimming and going for walks in his stroller.
Zaidyn was in and out of the hospital a lot. He visited Childrens National in Washington DC several times and the National Institutes of Health (NIH) to get testing done and more information. During his visits to Washington DC, we've met some amazing AGS families and their children. At age three, Zaidyn started getting sick; he got a brain bleed and was in the hospital for awhile then got sent home with hospice care. Zaidyn's 3.5 years of life taught his family, his doctors and his caregivers a lot. Even though he went through a long journey in a short time, he was loved by so many and will always be missed.