Residents in Melksham East have adorned their house with Christmas lights and decorations to raise funds for a three-year-old boy who has a rare degenerative brain disease.
The house on Rosemary Way is covered with hundreds of colourful lights and decorations, including inflatables and a snow machine, to support local boy Drae Mead-Strong, who is in urgent need of mobility aids at home.
The lights were switched on on Saturday 29th November and will be on every evening from 5pm until around the New Year. There will also be special appearances from Father Christmas.
Residents are encouraged to visit the display and donate what they can for Drae, who has two variants of TBCK-related ID syndrome, a rare degenerative brain disease that also affects his central nervous system.
Drae’s mum, Rachel Mead, told Melksham News the two variants have never been seen together in one person before, making Drae’s condition extremely rare.
She said, “We are raising funds to give Drae the care, equipment and experiences he deserves – things that aren’t always available through the NHS but make a world of difference to his comfort and happiness. Simple things like safe spaces at home, specialist equipment or days out as a family can make his life that little bit easier and give us precious memories together.
“We need vital adaptations done to our home to keep Drae safe.”
Family friend Nikita Dobson, who has decorated her home for the fundraiser, said, “The council can give him a £35,000 grant but they need about £90,000. We know we won’t raise that much but we just want to raise something that we can give to Drae to help him on his way.
“Even if it’s just £100 or something that we raise – it helps.
“It will make a great difference. It breaks my heart; he has always got a smile on his face no matter what he goes through and I just want to get him a bit more support.”
A collection bucket will be available at the lights display and donations can also be made via the online fundraising page: https://www.gofundme.com/f/help-us-to-help-drae-stay-safe
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