Plymouth family faces heartbreaking diagnosis of rare disease in five-year-old son

A Plymouth family have been speaking of their struggle following the devastating news their five-year-old son had an incredibly rare degenerative disease.

Dude Sutton was diagnosed with 4H Leukodystrophy POLR3B in April 2022, a condition which affects only four known children in the UK and targets the nervous system, gradually robbing Dude of his ability to walk, talk, hear, eat and perform basic tasks.

Since the shock diagnosis his mum Kerrie Sutton and dad Tony have connected with international specialists and visited America to take part in research.

The family has also launched a GoFundMe page to raise money to cover the many expenses associated with Dude’s treatment.

Within this, the family would love to take him to Disneyland.

Kerrie said: "We would love to do something like that whilst he still can. That would be a dream." 

The family have rallied around their son - Tony has given up his business to be Dude’s main carer and Dude stays at home with him on a Wednesday because he becomes too tired to manage more than two days in a row at school. His teachers have said his rest day is a huge help to him.

His older siblings Lewis, 28, Jake, 27 and Meg, 24, have left home but remain very supportive, as do Dude’s older sisters Star, 11, Rio, nine and Sunni, eight.

Kerrie explained the nature of the disease, which will sadly get worse over time.

She said: "It's a hyper myelination disease. That means he hasn't got enough white matter on his brain. So the messages that get sent from your brain to your body will diminish over time. It progressively gets worse until he can't walk or talk anymore."

“I still go to work for now, but when Dude deteriorates I will be looking at giving up work to care for him, as I need to be there for him.”

In their search for answers and potential treatments, the Sutton family sought guidance from Dr Nicole Wolf, a specialist based in Amsterdam who focuses on the disease. 

Subsequently, the family travelled to the United States to connect with other families affected by the condition and participate in research efforts aimed at understanding its underlying causes.

As part of their journey, the family participated in research initiatives, including blood tests conducted in America. 

Kerrie said: "His sisters gave blood in America to try and see what causes it and what the differences are. We couldn't afford to see the doctor over there because it was £5,000." 

“His sisters are great with him, they know what's happening and we have been honest with them. His older siblings are fantastic - they help us when they can, like looking after the girls while we took Dude to Amsterdam to see Dr Wolf.”

Kerrie said she was grateful for the support they had received from professionals in the UK, but highlighted differences in healthcare systems, noting challenges in accessing certain treatments and therapies in the United Kingdom.

"Over there (America), they're doing loads of preventative stuff," she said. 

"Here, we're battling with physios and occupational therapists to do anything with him. It's like I'm fighting for nothing."

In their efforts to provide the best possible care for Dude, the family use various strategies to support his motor skills. 

Describing their approach, Kerrie said: “We’re constantly engaging Dude in activities to maintain his fine motor skills. He plays with baby toys, focusing on tasks like shape sorting and putting things into envelopes. We’ve even built him a sensory board with locks, keys, and zippers to help him develop his fine motor skills every day.”

Despite the challenges they face, the family have remained determined to provide the best possible care for Dude. 

"We're just taking it one day at a time," Kerrie remarked, "we don't know what's going to happen or how fast it's gonna happen."

The Sutton family remains focused on cherishing every moment with Dude and celebrating his spirit. Kerrie has created a Facebook page dedicated to sharing updates on Dude's journey, with the tagline, ‘Dude is five and is living his best life’.

She said: “I have tried to record his journey as it's so rare and I want to be able to help people in the future if this happens to them.”

If you would like to make a donation towards ongoing expenses for Dude’s treatment, please go to https://www.justgiving.com/crowdfunding/getdudetodisney