Retro fundraiser in Dysart for boy with rare genetic disorder

Three Kirkcaldy friends are stepping back in time to raise funds for one of the group’s grandson’s who has a very rare genetic disorder.
Aron and sister EllieAron and sister Ellie
Aron and sister Ellie

Litte Aaron Nisbet who turns three next month, suffers from Temple Baraitser Syndrome.

He is one of only around 16 in the world to be diagnosed with the condition which leaves him unable to sit or eat unassisted and he requires round the clock specialist care.

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Now the trio – Flora Morrison, Karen Ramsay and Aaron’s gran, Rae Gibson-Ross, who all met when they lived in Kirkcaldy’s Dunnikier Estate, have got together to organise a special 1980s fundraising night.

They hope to raise money to buy a special bed and/or chair for the youngsters which will help to keep him safe.

The Eighties Party Night will take place at Dysart Masonic Lodge on Saturday, May 11, and will feature a raffle, bingo and auction.

Flora, who came up with the idea, said: “We have all known each other since our own children were small, so we have known about Aaron’s condition for a while.

“We wanted to do something to help and, because we are all of a certain age, we thought an ’80s themed night would be a good idea.

“We have sold quite a few tickets already, but we would like to sell them all to raise as much money as we can to help buy Aaron a specially adapted bed that he can’t fall out of, or a chair that will provide him with special support.”

Aaron recently moved to Inverness from Kirkcaldy with mum Jemma, dad Lee and big sister Ellie (7), to be nearer Lee who is in the Army.

Jemma, who is manageress at a toy shop in the city, told the Press: “Flora and Karen are close friends of my mum and I grew up in Kirkcaldy with them, so they have always been part of my life.

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“I am a bit overwhelmed about this because we are quite a private family, but it is great to have people who care about you.

“At the moment Aaron is still in a cot because he can’t sleep in a normal bed as he would fall out of it. To have this specially adapted one would be great as we could relax knowing he was safe at night.

“He goes to a nursery for children with additional needs and, although we get some equipment from the NHS it’s too bulky to take out of the house, a chair would allow him to do much more and be in among his peers.

“We are very grateful to my mum and Flora and Karen for doing this and we will be down for the event to meet the people who are supporting this.”

Tickets for the event priced £10 include stovies, mac and chees or curry and are available on 07817 448510 or 07871 526677. Those going along are encouraged to dress on an ’80s theme with prizes for the best male and female outfits.

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