Jesse’s Story

Here at the Deaf Academy many of our students have additional needs along with deafness. Ten year-old Jesse, who has CHARGE Syndrome, has attended the Deaf Academy since the age of four.

Jesse was born in May 2010 – seven weeks prematurely – with multiple heart defects, and was diagnosed with CHARGE Syndrome at six months. CHARGE is an extremely complex syndrome which affects one in every 10,000 births, and for Jesse it comes with the challenges of severe hearing loss, impaired vision and mobility difficulties.

Throughout his early years Jesse and his parents faced misdiagnoses and uncertainty about his future. In September 2014 his parents, Rachel and Joe, decided to move to Exeter from London so that Jesse could attend the Deaf Academy.

On arriving here, Jesse was unable to walk, didn’t interact with others, and didn’t know how to play – but this quickly began to change. After just two months at the Academy, which included one-to-one physical and occupational therapy, communication development, stimulation and play, Jesse was walking down the corridor. Clive Fowler, a consultant with the deaf blind charity SENSE, described Jesse as going from ‘a little boy who has waited for the world to act upon him, to a little boy who is willing to act upon the world.’

Jesse is now able to walk and run independently, and loves to play. He is learning to communicate, including using BSL, and to eat independently, as well as further developing his mobility and engagement with others.

“It’s been a huge relief for us, because we are safe in the knowledge that he is being looked after and is going to have a great future. That’s enabled us to relax and to enjoy him for who he is.” – Jesse’s dad, Joe.