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Asher McGarrity, aged 2, from Glenrothes, Fife, was diagnosed with cdkl5 deficiency disorder at the age of 11 weeks.
The disorder causes seizures and spasms and affects development. Asher cannot hold his head up up, roll over or babble, and often becomes distressed. His vision is also poor.
However, he is also a smiley little boy. The condition is known to be drug-resistant and his parents Ruth, 34, a warehouse operative and Lee, 31, a roofer and rough caster, are fundraising for alternative therapies and private physio.
‘We’ve seen a real improvement in Asher since he started taking CBD oil,’ Ruth said. ‘His vision seems better and it feels like we are getting him back little by little.’ Asher also takes several other supplements.
The family are holding a fundraising event on Saturday November 26 at Ciswo Glenrothes from 7pm to include both a kids’ and adults’ disco, and raffles and tombolas with prizes a tour round the Ibrox Rangers Stadium, and beauty and meal vouchers and a pet photoshoot. There will also be visits from Marshall from Paw Patrol and SpongeBob Squarepants. Tickets cost £10 for adults and entry is free for children. All funds raised will go towards therapies for Asher.
Ruth added: ‘Local businesses have been so generous with donating prizes and I couldn’t have done any of this without my friend Suzie McCloud who has really taken me under her wing when it comes to fundraising.’
The family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Asher with healthcare needs and provides charity status to benefit from gift aid, corporate support whilst also providing donor reassurance.
Tree of Hope CEO Gill Gibb said: ‘This sounds like a really fun event with some great prizes on offer and it’s wonderful to see the local community getting behind them. We wish the family all the best with it.’
To donate to Asher’s fund, visit https://www.treeofhope.org.uk/help-for-asher-mcgarrity/
