Bodhi N's quilt   (Quilt Coming Soon)

Theme details

Vehicles - Cars, Trains, Diggers, Fire Trucks, etc - any sort of vehicle.

Perhaps some horses/ducks on the label

Child Interests

Bodhi loves farm animals, especially horses and ducks. He has 2 black Labradors at home which he loves.
He loves music and his favourite instrument is the drum.
He loves being outside around nature, lakes and trees.
His favourite colour is blue.

Biography

Bodhi was born at 27 weeks gestation. From birth it was clear something wasn’t right, he was unable to breathe for himself, couldn’t control his temperature or electrolytes and couldn’t move like a regular baby. By 2 months old there was no improvement and he was still relying fully on a ventilator to survive. Once Bodhi reached full term we were able to begin genetic testing, this testing came back that Bodhi has a very rare condition affecting the ‘MAGEL2’ gene, we were told there was no name. As his parents we took it upon ourselves to do more research, resulting in finding a small Facebook group with the same finger contractures as Bodhi as the photo. His condition is called Schaaf-Yang syndrome. It affects muscle tone including breathing and eating, joint contractures which Bodhi has finger contractures, developmental delay and respiratory distress. At the time of Bodhi diagnosis there were approximately 200 diagnosed worldwide.
Doctors struggled with treating Bodhi’s symptoms as he was displaying new symptoms including seizures. Each time they attempted to try Bodhi with a CPAP mask instead of intubation he would have a seizure making him extremely poorly. At 5 months old after a risky intubation attempt the decision was made to give Bodhi a tracheostomy. Bodhi came home for the first time at 8 months old.

Bodhi is now 7 years old and the years haven’t been easy. This year he has learnt to sit up unaided and has had his tracheostomy removed. Although he is non verbal and needs 24/7 care he is the happiest little boy I know.