Bedford mum appeals for help to create inclusive home for son with rare genetic deletion

A woman from Bedford is trying to raise £25,000 to create an inclusive home for her son who has an incredibly rare gene deletion.

Katie Powles, from Wilstead, is appealing for the public's help in raising the funds to make the adaptations to the house for her six-year-old son, Grayson.

The house adaptations will enable the family to provide him with a downstairs bedroom, wetroom and adaptations throughout the downstairs.

Grayson is currently sleeping in the living room and has no access to suitable washing facilities.

Katie said: "Grayson has an incredibly rare large gene deletion which involves 4 genes. Due to this he has multiple complex disabilities.

"Grayson is blind, he has profound learning disabilities and is non verbal. He has very poor muscle tone, he is unable to sit unaided, stand or walk which means he is fully reliant on a wheelchair, specialist equipment and daily physiotherapy.

"He has a hormone deficiency which means he requires daily injections to regulate his growth hormone. Due to growth hormone we have seen Grayson have rapid growth spurts and he is now to big to safely lift and carry.

"Currently Grayson sleeps in the living room as it has become impossible to carry him safely up the stairs, which also means he is unable to access our bathroom upstairs too.

"Our doorways are not wide enough to fit a wheelchair into the rooms of the house and the back door is not wide enough or accessible enough for Grayson to go outside in the garden in his specialist seating.

"When Grayson needs changing he has to be lifted onto and off of the floor or in his bed which is neither dignified or hygienic.

"Grayson is now desperate for adaptations to be made to our home, so he can have his basic human needs met and so he can be included in every day life as a family and with his siblings.

"Grayson needs a downstairs bedroom and wet room with proper changing facilities so he has his own space and privacy and he can have his dignity restored.

"He needs an open plan living space so he can access all aspects of family life and be included like any other child.

"Without these vital adaptations Grayson's quality of life is vastly reduced but it all comes at an expense, which unfortunately isn't fully covered by a disability funding grant and our savings so we desperately need help and fast.

"We need to raise £25,000 to make up the deficit of the work, after the grants.

"We are now fundraising with the wonderful support and guidance of Sullivans Heroes. Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity."

Katie, who is also mum to Nine-year-old Lily, and an 18-month-old daughter, Ivy-Rose, said: "Covid-19 has had a huge impact on the disability community, us included.

"Unitl now, COVID-19 has meant we have been unable to go ahead with any fundraising events which has meant we have been reliant on online donations.

"Now lockdown restrictions are relaxing we plan to cycle 46 miles to Great Ormond Street on July 25, which we hope will help towards raising vital funds for Grayson.

"His sister Lily also wanted to take part but due to safety reasons she will be cycling her 46 miles locally the following week on August 1.

"We are desperate now, we need help and support to make these changes, Grayson desperately needs it."

Sullivan's Heroes offers fundraising support for families in the UK with disabled children who need to adapt their homes to meet the child's care and health requirements.

To make a donation visit: www.sullivansheroes.org/projects/graysons-inclusive-home/ or click here.