Jesse is a 2 year’s old boy from Wantage in Oxfordshire. He was born with severe brain abnormalities. He is missing a central structure within the brain which allows the two hemispheres to interact and for messages from the eyes to be received. It is suspected that this is due to a rare genetic disorder; a second round of testing is underway however we may never reach a formal diagnosis.
Jesse’s brain abnormalities impact upon every aspect of his little life. He has a cortical visual impairment (CVI) and is registered as blind. He is delayed in all aspects of development; is non-verbal and has little to no mobility.
Messages from Jesse’s brain cause muscle spasms and increased tone, meaning his body is stiff and rigid most of the time, for which he takes medication every day. Jesse has an unsafe swallow which means he is at risk of choking or food/liquid entering the lungs. As such, he underwent surgery to insert a permanent Gastrostomy Button and receives all of his food and drink via a tube.
We are so fortunate to have a fantastic children’s hospital on our doorstep, but there are limits to what the NHS can provide.
Jesse requires intensive and specialist physiotherapy, which is only accessed privately, and as life goes onwards he will need further therapies and equipment to help him reach his full potential and allow him to be fully integrated and involved in family life.
Jesse has two big brothers who adore him and give him endless amounts of love and affection. We want nothing more than to give Jesse the best quality of life possible, and we hope to one day see him interacting and playing with his siblings.
Private therapies and specialist equipment are key to Jesse’s development and wellbeing, but they come at a high cost.
We thank you for any donation you can make towards accessing these.