Jamie's sensory escape

Jamie is our seven year old son who has a very rare genetic disorder called Bohring-Opitz Syndrome. Jamie was diagnosed just over four years ago and he is one of only 107 children in the world with this syndrome.
Jamie is pej fed into his tummy and has a long list of medical complications including developmental delay, epilepsy, scoliosis and congenital heart disease.

In November 2015 Jamie suffered full cardio-respiratory arrest following a 45 minute seizure.
The cause was enterococcal sepsis and it left him fighting for his life!
After spending many weeks in intensive care Jamie began to show signs of improvement and made a slow recovery over the following months. An MRI and cat scan showed Jamie to have further brain damage following the arrest, causing dystonia and doubts as to whether his swallow, sight or hearing would return. Jamie has been home now with his parents and big sister Lara for a year and a half with only a few short admissions to hospital; he can swallow, he can see and he can hear! He is a fighter!

As a family, our days are spent surrounded by medication and medical equipment, hospital appointments and admissions, physiotherapy and tube feeding. We wouldn't change it for the world.

Due to the further difficulties in Jamie's health he rarely makes it to school and there are some days when he can't even leave the house, so we are aiming to have an outside space where we can go with Jamie and enjoy our time together as a family. Ideally, it would be an enclosed outside space with sensory aids, music and heating so we can interact with our boy and bring him the sensory stimulation he needs.

Thank you for taking the time to read our short story and would appreciate your help greatly
Jamie, David, Carla, Lara