Parents of boy, 5, with rare condition say youngster has 'never given up'

10 April 2024 , 13:58

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Despite Jaxon Crawford having to repeatedly visit hospitals and undergo surgery for Kabuki syndrome, he often seems "unfazed" by his condition, according to his auntie (Image: Linda Clarke)

A young boy suffering with a rare disease that causes complex symptoms has never given up, according to his proud family.

Jaxon Crawford, five, is struggling with Kabuki syndrome, a rare congenital disorder only affecting one in every 32,000. The youngster suffers regular seizures and a number of other health issues. In his young life, he's already had to have teeth removed and is often at the doctors of hospital for check ups. During one recent visit, he had to undergo open-heart surgery to mend a hole in his heart.

Speaking to the ECHO, his mum Melissa Clarke said: "I wouldn't change Jaxon for the world, but I will do my best to change the world for Jaxon." Jaxon suffers from an extra rare form of Kabuki known as type two, which causes skeletal issues and makes him shorter in stature. The disease also affects growth, so he has to undergo regular hormone treatment and will continue to do so until he is 16.

However, according to his auntie Linda Clarke, 37, from Toxteth, Jaxon at times seems unfazed by his health issues. She said: "Jaxon is a brave young warrior battling a rare condition. He has these problems, but you'd never know it. He's always running around and so full of energy. Jaxon's spirit remains unbroken."

Only 144 children in the UK have Kabuki syndrome (Linda Clarke)

There are only 144 children in the UK who have formally been diagnosed with Kabuki syndrome. It is so uncommon that doctors often misdiagnose it and will likely never treat a sufferer of the disease. This was the case with Jaxon. From birth, he faced numerous hospital visits. Jaxon battled with pneumonia and feeding problems and his family struggled to find answers. He was eventually referred to a specialist at Great Ormond Street Hospital in London, where his condition was confirmed as Kabuki.

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While Kabuki is a complex disease, his family were relieved to finally have a diagnosis. Such is the rarity of Kabuki, the doctor told Jaxon's family that he's only had two patients with the disease in the last 20 years. Jaxon's mother, his auntie, and family friend Lois Murphy set up the Lumiere charity in January to raise funds and awareness of Kabuki syndrome, as well as opening soft play centres for children with additional neurodivergent needs.

Linda said: "There's only 144 children in the country who have officially been registered with Kabuki, (so) we want people to be more aware and see the signs of it," As part of her charity work, from April 17, Miss Clarke is staging a charity 200-mile charity walk as well as hosting a charity football tournament.

The family have received support from the Deputy Lord Mayor of Liverpool Cllr Richard Kemp, and mental health campaigner Bernie Hollywood. The 200-mile walk will start from the Royal Liver Building in the city centre, with its finish line being at the House of Commons. Linda is aiming to complete 20 about miles per day. So far, £1,500 of £10,000 target has been raised. Her crowdfunder for the charity is here.

Luke Gill