AN AYR family are raising funds for their daughter who has been diagnosed with a rare genetic mutation following a brain aneurysm.
Jessica Entwistle, now seven, has been back and forth to hospital since she was 18-months-old.
Over the weekend, and with the help of others, the Entwistle family climbed almost 1,000 metres and back over Ben Lomond for their daughter Jessica.
Jessica is believed to suffer from a disease caused by a genetic mutation, know as MAP2K1.
In the Summer of 2020, she temporarily lost her vision at home. A scan revealed Jessica had suffered an aneurysm. Combining this with other episodes Jessica has had since she was a toddler, doctors were stumped at what was causing the youngster and her family so much distress.
Her case went out to the European paediatric society, where the top neurologists in Europe come together to discuss cases that are unusual.
Despite the various professional opinions, it is unknown whether Jessica’s disease is progressive.
An online statement from Jessica’s parents, mum Cheryl and dad Thomas said: “We have continued to fight for answers for our lovely Jessica but always find ourselves unprepared for the answers received.
“We want to keep raising money for Jessica’s Journey to help her with the rare genetic disease that she has unfortunately been diagnosed with.
“Jessica faces struggles everyday and yet you never see her without a smile on her beautiful face.
“She is a true MAP2K1 warrior and we will do all we can to help her and try to find answers to this genetic mutation with no name.”
The Entwistles walked Ben Lomond on Saturday, fundraising to help Jessica with her condition.
Last year, Jessica’s brother Aaron walked the distance from Ayr to Great Ormand Street Hospital in London to raise money for his little sister.
The pair set an initial target of £4,111, since the distance to Great Ormand Street from their home was 411 miles. The family raised over £8,000.
The statement continued: “We always knew from the moment that we laid eyes on her that she was super special.
“Jessica’s diagnosis has been a lot to take in.
“When Aaron did his virtual walk covering the miles from Ayr to Great Ormond Street little did we know that this journey was going to become part of our lives now.
“With fear in our heart and love behind us, we keep moving forward with hope and faith.”
The family have raised £1,600 from Saturday’s walk. To donate, you can visit: gofundme.com/f/26wrvp-jessica -joys-journey
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