Ashby's Fight for Medical Equipment Access

Ashby is a very happy and loved almost one-year-old, even on his hardest days he is smiling and happily babbling away at his brothers. This past year has been hard on him and his family, starting when he and his twin brother had to be born early at 27weeks. But from the very start, Ashby has shown us he is an incredibly strong little guy and ready for any challenge thrown his way. He has Global Cystic Periventricular Leukomalacia (PVL), which is a severe brain injury, chronic lung disease of prematurity, infantile epileptic spasm syndrome, and is expected to have multiple different types of seizures as he gets older. He has residual macula pigmentation and atrophy and cerebral visual impairment (CVI)—every specialist we have seen has given a different prediction of what they think his vision will be, but all agree it won't be good. He also has cerebral palsy; however, we are unable to get a formal diagnosis for this due to Boston Children’s typically not diagnosing before kids are 3. Without the formal diagnosis, insurance will not help us pay for medical equipment related to his cerebral palsy.

Right now, Stephanie is fighting to get him into feeding therapy because he has shown us he wants to eat, and he has had a swallow study done that shows us he can safely eat, but his medical team wants him to have a feeding tube. Stephanie is not ready to take another thing away from him.

These funds are going to get Ashby a chair to assist with feeding and to sit up in his wagon with his brother, a “playpak” to aid in his physical therapy journey and that will help him play and interact with his brothers, and a "bath" chair that he can use during baths with no safety concerns and get to enjoy the beach with his brothers.