Published: 24/02/2016 08:32 - Updated: 23/02/2016 17:32

Family inspired to help others by 'butterfly girl' Isla's skin plight

Written byRachel Treasurer

7-year-old Isla Grist with mum Rachael
7-year-old Isla Grist with mum Rachael

A SCHOOLGIRL has undergone nine operations in just three months as she battles a painful genetic skin disorder.

Isla Grist (7), has also had to travel to London with parents Rachael (40) and Andy (42) to have her fingers straightened and her throat stretched.

A loving hug from her mum and dad or a playful tussle with her sister could leave Isla’s skin covered in wounds which have been likened to third degree burns.

The wounds are also easily infected, which is why much of her body is swathed in bandages.

Mrs Grist, who is her daughter’s full-time carer, said: "Both my husband and I have a genetic mutation and if you put two people together that have it, then you have a one in four chance of having an affected child.

"It is a challenge. In the last two-and-a-half months we have been up and down to London every week to have her fingers straightened because as they healed, they got tighter and fused together.

"November 24 was the first time she went down and since then she has had eight operations on her hands and one throat stretch. We go to London because that’s where the specialists are, but we are now talking to Raigmore Hospital in the hope that we can do them there instead. If we could just eliminate the travel, that would be a big help."

When Isla was born it soon became apparent that something was wrong. Her feet were red raw and she was immediately whisked away to the special care baby unit, where a consultant recognised her condition.

With both of her parents carrying a genetic mutation, Isla was quickly diagnosed with the skin blistering condition Epidermolysis Bullosa (EB) and has had undergone treatment ever since.

The North Kessock Primary school pupil has a carer who works with her in class and big sister Emily (10) has had to adapt to having a sister she cannot really play with.

"I go to the school assembly every year just to speak to all of the new kids and to remind all of the older ones to be careful around Isla," Mrs Grist said.

"I always say to them that it’s like making a cake and if you forget to put an ingredient in, it just doesn’t allow Isla’s skin to form the way that ours does.

"As she gets older the social pressures will increase a bit more. At the moment she has older kids that act as her buddies at school but I think when she gets older everyone will just expect her to be a bit more independent.

"Emily has been great and it must be very difficult for her because she’s got a sister that she can’t really play with. We do spend a lot more time doing things with Isla. It is difficult and you always feel guilt, but that’s no different from any other parent."

The Grist family, of Tigh Na Innis, Bogallan Croft in North Kessock, regularly fundraise on behalf of Isla and EB charities Debra and the Sohanna Research Fund. In 2010 Mrs Grist ran both the Edinburgh and London Marathons and raised an impressive £11,000.

Since then, the family has helped to raise money for both charities by holding events and competing in a number of challenges.

However, at the end of last year it was the Grist family who were shown a great deal of kindness when members of the community rallied to help Isla buy an £1000 specialised bike.

Sister Emily started off the fundraising cause selling blackberries to help generate funds. A GoFundMe page was set up from there which incited a flurry of donations from kind-hearted Highlanders who wanted to help little Isla finally ride a bike.

"Every year I do the Great Wilderness Challenge and we always have a team that specifically raise money for Debra - the national charity that raises money for EB," Mrs Grist added.

"When we raised money to help Isla get her bike we were getting money sent in by postal order. These people probably don’t have very much money and they went out of their way to send us something. We were really touched by people’s generosity.

"It’s mainly about raising awareness for us because there’s not many kids that have EB. We try and keep a low profile and just get on with life rather than making EB all consuming.

"We want Isla to be treated as normally as possible which I’ve always said - we are not going to let EB take over."

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