Sonny was born with cerebellar atrophy. This means he has little to no motor control and movement and has very little control of his own body. He cannot walk, or talk (although he does have his very own way of communicating) or help himself in any way but he's a pro at smiling and leaving a lasting impression upon everyone he meets. He relies heavily on me, his mum and his dad to lift and carry him into his wheelchair, up and down the stairs to his bedroom and in and out of the bath.
Sonny is ventilated 24/7 and uses a mobile life support machine. His lungs collapsed after a serious episode of pneumonia in 2012. He no longer has the ability to support his own breathing.
Sonny's dad Matthew and myself lift and carry Sonny up and down the stairs. THIS IS BECOMING INCREASINGLY DIFFICULT! We love our boy unconditionally and would do anything for him but Sonny is getting bigger and heavier, not surprisingly, and handling him on the stairs is becoming an issue. He's getting tall, he's floppy and he and his ventilator are both dead weights.
We've had a few close calls; wobbles coming down the stairs and trips going up. This is terrifying when you are holding your child tightly so he doesn't slip out of your arms and you're also carrying his essential breathing apparatus on your back. I can't even think about what would happen if one of us lost our footing and we dropped him.
We desperately need a downstairs bedroom and bathroom for Sonny. We have no room in the living area for his hospital bed and all of his equipment.
We have been applying to Somerset County Council for a build for 9 YEARS. Each time we feel we are getting close to starting the build, another hurdle crops up. We are now at the stage where all planning has been ticked off but because it has been such a lengthy process, we are now way over budget.
We have been granted £30,000 using a DFG (Disabled Facilities Grant) but the build itself is estimated at £60,000. This means we are an estimated £30,000 short. This is A LOT of money, money that we simply do not have and cannot find, no matter how hard we work.
So we are doing something we said we would never do (because we are usually pretty good at resolving our problems). We are asking for help. We are asking our family, our friends and friends of friends, indeed anyone and everyone who reads our story to gift just a few pounds to please help us build a space for Sonny. It would mean so much. If you are unable to donate but would like to help, please share our story.
Having a downstairs bedroom and bathroom for Sonny would mean no more dangerous lifting and carrying him and it also means his older brother who is 13 years old will no longer have to share a bedroom with his 6 and 4 year old sisters. Every donation will be gratefully received with huge thanks!
Thank you so much for taking the time to read our story.
Andrea, Matthew & Family