Cauldeen Nursery in Inverness to benefit from fundraising
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A MOTHER whose three-year-old son has an extremely rare genetic condition is hoping to generate even more money for his Inverness nursery after managing to raise more than £2400 last year.
Jemma Nisbet (32), who is originally from Fife, moved to the city after her son Aaron was one of just 20 in the world to be diagnosed with Temple-Baraitser syndrome – which means he is developmentally delayed and he might never be able to walk or talk and cannot swallow.
The first sign that something might be wrong was that he was born without thumbnails or nails in his big toes, a common trait, and the condition means his body is also “floppy” as he cannot tense his muscles properly.
Aaron attends the Butterfly Room for children with special needs at Cauldeen Nursery and has been making good progress.
Mrs Nisbet wanted to give something back to the nursery as a thank you for helping her son and last year she took part in a number of events – including the 10k Loch Ness Beast Race and a night of mediumship with Tommy Goodwin and Hills Forsyth – to raise funds.
She said: “We raised over £2400 for the nursery last year which was outstanding, and they have used the money to buy equipment and new sensory toys.”
Aaron’s sister, eight-year-old Ellie, is also hoping to join in on the fundraising effort by taking part in a children’s version of the Beast Race in Fife.
Mrs Nisbet said: “She loves to get involved and help as much as she can. We also will have various bake sales, and raffles to help tide us over while we organise other events.
“There is already a team doing the Beast Race again this year and someone has offered to do a 5k race for him too. We are so lucky to have people like this in our lives.”
She said Aaron was doing well thanks to all the support he was getting, and added: “We have had one hospital admission since the summer. Aaron was rushed to hospital in an ambulance as he had a seizure and his feeding tube became dislodged. So we ended up back in Aberdeen to get that replaced.
“Aaron’s been getting stronger and stronger, and we have been working him really hard. The nursery is doing great with his eating as well, and he is even managing to eat some solid foods orally.
“Aaron is a fantastic little boy who captures the hearts of many. He also has almost 700 people following him on his Facebook page – Genesdontfit – and we use the page to post updates and events.”
Related article: Brave Inverness youngster just one of 20 in the world with extremely rare genetic disorder
