Fundraiser launched for 'most loving and kind' disabled Clowne boy with rare genetic condition and brain tumour

Ashton-Lee Fearn-Betts, 15, from Clowne, is one of 300 people across the world who suffer from HNRNPU disorder – a rare and atypical genetic condition characterized by developmental delay, intellectual disability, and seizures, among other symptoms.

The teenager, who was also diagnosed with a low grade glioma in the mid centre of his brain, lost his ability to speak, and relies on a wheelchair as well as a ventilator, feeding tube and suffers from double incontinence, relying on constant support of his care workers.

Jemma Betts, Ashton-Lee’s mum said: “The conditions affect him in every way. He literally relies on someone in every aspect of his life.

"He is a gentle little soul. He is very brave. Despite everything that he goes through he's always got a smile on his face, no matter what. He is cheeky, mischievous, loveable. He is the most loving and kind little boy ever. He absolutely adores his carers.

"He needs an electric wheelchair, because he has a lot of heavy equipment. It keeps breaking his wheelchairs because of how heavy it is. Carrying him around with all his equipment is really difficult."

To help Ashton get his specialist wheelchair, his carers Louise Metcalfe and Toni Wilkins launched a fundraiser and are set to brave a 14,000 feet skydive.

Louise said: “Ashton is an amazing young man who despite everything deserves to have the best quality of life. He loves being out and about, his current chair really isn’t suitable any more, he and deserves to have a chair that meets all of his requirements and unfortunately there isn’t funding available so that’s why we wanted to do something ourselves.”

Louise, who has been caring for Ashton for about 14 months, has a difficult recovery behind her. She fractured her spine at work and was unable to walk.

Jemma, a mum-of-four, said: “ Louise was off work for a long time and she was not even sure she'd be able to walk or do anything again.

"She has not only got back up and got come back to work, she now wants to jump 14,000 feet. It's incredible that Louise, out of everyone, offered do this.

“Louise and Toni have not been with Ashton that long, but they have had an incredible impact on his life and on the whole of our family.

"Ashton has got an amazing set of carers and they adore him. I couldn't ask for a better set of people to look after him.”

Ashton, who was born healthy, was just seven months old when he was rushed to hospital after he stopped breathing due to a febrile convulsion. He was released home only a few hours later and his parents were told there were no further concerns as the convulsion was caused by fever.

But the episodes continued and Ashton was diagnosed with infant onset epilepsy at the age of one. Doctors hoped that he would outgrow the seizures by the age of five and Ashton continued to grow up and develop like any other child.

He soon learned to ride a scooter and a bike and he started playing football. Sunday roasts became his favourite food and his family have fond memories of Ashton stealing everyone's Yorkshire puddings.

He started attending a mainstream school, but his seizures got worse and he suffered with injuries, forcing him to stay at home.

His condition regressed quickly and in 2014 he lost his ability to speak and was diagnosed with severe autistic regression and Lennox-Gastaut Syndrome, a severe form of epilepsy, a year later. Ashton started struggling to chew food and became doubly incontinent.

Over the next few years his condition worsened even further and in December 2018 one of the epilepsy attacks saw Ashton going into respiratory arrest. He had to spend next five months in the hospital, and he was forced to rely on a gastric port to be fed.

In 2022 he had another bad seizure, which caused a further respiratory arrest and Ashton was placed on life support and transferred to Sheffield Children's Hospital.

Further tests showed that Ashton had a low grade glioma mid centre of his brain which was inoperable due to its position. Due to his complicated medical conditions, his family was told, that he would not survive a surgery.

They were also told that if his condition worsens, Ashton won’t be able to start chemotherapy or radiotherapy due to his complex needs.

Ashton was rushed to a hospital again in December 2023 due to bad epilepsy attack and put on life support until February. He went through a tracheostomy and has been placed on a ventilator. His family heard he would never be able to breath on his own again and would need to rely on the ventilator through the rest of his life.

After further tests were done, in 2024 Ashton’s parents were told he had the HNRNPU disorder – which took 14 years to be diagnosed.

Speaking about Ashton’s health difficulties, Jemma added: “It's been really difficult. There were many times doctors and other people gave up on him.

"I refuse to give up. If I started giving up on him, then he will give up on himself, and I will never allow it.”

Donations for Ashton’s new wheelchair can be paid through his Go Fund Me fundraiser page.