Help give William a safe space to play ❤️
Hi my name is Lucy and I have set up this page to raise money to build an extension onto our family home for our son William who is 3 years old.
Our family home currently consists of a lounge/dining area and a separate kitchen. We desperately need an extra room as a “safe space” for William to be able to play without causing himself any harm.
William was born with a rare genetic condition called Sotos Syndrome. Along with this William has Hydrocephalus, severe kidney reflux, hypotonia, global development delay and he is also none verbal.
One of the “traits” of Sotos syndrome is a very high pain threshold. Williams hypotonia means he can fall very easily and is unstable on his feet. When William falls he doesn’t react but can cause considerable damage. We have to closely monitor William at all times as he is also none verbal so can’t explain if he’s fallen over. William will also throw himself to the floor when upset which can result in injury if not controlled.
Unfortunately we currently can not afford to carry out the building work on our own so have set up this page hoping for some help.
We need a ground floor extension and have had a quote for approximately £30,000 for a room with direct access to the garden which is Williams favourite place. Having a safe space for William to be able to play would change his and our lives, he could hopefully gain some independence.
William is the loveliest, kindest little boy who has had a very tough 3 years. He has had numerous surgery’s including re-implantation surgery for his kidney reflux (which hasn’t worked) and 2 ICP monitoring sessions. We are currently awaiting a date for cerebral fenestration surgery. Williams kidneys are also only functioning at 20% so more surgery will be required to try and save them.
Thank you so much for taking the time to read our story and if you could share our link it would mean the world to us.
we hope everyone is staying safe and well during these unprecedented times.
love from our TJ Tribe xxx
