Kerrie and Tony from Plymouth have their hands full with 7 amazing children.
Dude was born just before the Covid pandemic and after bringing up 6 children, Kerrie immediately knew Dude was different.
Dude was struggling to keep up with his siblings, and his legs were quite wide apart meaning he walked with a wide gait.
Kerrie said:
He was very wobbly when he attempted to walk, he was like Woody from Toy Story. He kept bumping into things and falling over, he was really unbalanced.
Kerrie knew that Dude was not reaching the normal developmental milestones that he should be and at 18 months old she took him to the health visitor, who noticed the issues with Dude’s balance. She didn’t think it was anything to be concerned about so sent Dude home, but he progressively got worse.
Initially doctors ruled out a neurological condition being the cause of Dude’s problems, but it was soon revealed it was. During the pandemic Dude began obsessing over things, and Kerrie assumed he may be autistic. He was seen by doctors and then sent to Derriford Hospital to have an MRI.
Dude was at Derriford for a week having blood tests and MRIs, and on the last day it was revealed that he didn’t have enough myelin around his brain. The nerve endings in his brain didn’t have insulation, so the messages being sent to his body were juddery, resulting in jerk movements and imbalance.
Kerrie, Tony and Dude then had genetic testing and had to wait 3 months for the results to come back.
The family were then called to the hospital.
Kerrie said: “I started to panic then. I knew that if we were being called to go up, that it was going to be something serious.”
Dude was diagnosed with 4H leukodystrophy. At the time, the doctors didn’t know much about the condition. All Kerrie knew was that it was a degenerative disease, and Dude would slowly lose his abilities, but it was unknown at the time how long this would take.
“At that point, we thought he was going to die in 6 months, as we were so unsure of the timelines of this disease”, said Kerrie.
We went home, and I cried for 3 months. But then I screwed my head back on and said, ‘let’s sort this out and see what’s happening’. I began googling to find out more about his condition.
Kerrie discovered the Yaya Foundation, an American charity for 4H leukodystrophy. She also found out there were 3 doctors that knew more about the condition, in Amsterdam, America and Canada.
The family hopped on a plane to Amsterdam, taking all of Dude’s MRI and blood results with them. While there he had further testing, and the doctor confirmed the diagnosis was correct. She was an expert, and explained more to the family about the condition, and reassured Kerrie that Dude was not going to die in 6 months. The condition is known to affect children in different ways, and some deteriorate faster than others.
“Some children lose their speech and their ability to walk; no child is the same”, said Kerrie. “There were no guidelines for us to go by.”
When the family returned from Amsterdam, they kickstarted their fundraising to get Dude whatever he needed! They also raised £5,000 for the Yaya Foundation as they were “the only hope we had”, said Kerrie. They also discovered Alex TLC, another Leukodystrophy charity, for further support. They have raised around £2000 for Alex TLC to date, and will continue this at every opportunity.
_2.png)
Dude’s emotions can be really dysregulated. He can go from really happy to really upset in a matter of seconds, and he struggles to understand how to regulate them.
“You can talk a normal child round, but it takes him a long time to process and understand what people want him to do and say”, said Kerrie.
“He’s a very loveable child, and he really likes socialising with adults. He can find it hard to play with other children, but he will happily ask me maths questions until late at night. He is very clever academically but not always socially.”
Dude will turn 7 in November and as he is getting older he is beginning to crack jokes, he’s got real character.
Kerrie now feels like she is clued up on Dude’s condition.
“It is a lot different now compared to when we first found out. I could’ve done with someone like me, knowing what I know now, back then. But there wasn’t really anyone.”
Dude’s Paediatrician referred the family to Little Harbour 2 years ago. But Kerrie was quite hesitant to visit the hospice.
“Don’t get me wrong, in the beginning I thought, no thanks. Not a hospice. I’m not doing that; I’m not taking him there to die.”
But the Paediatrician explained Little Harbour to Kerrie and showed it to her. She agreed to go. “Just this once”, Kerrie said. “I’ll go to keep everyone happy.”
“But I’ll tell you something, it is the best thing we’ve ever done”, Kerrie continued.
“The people, the place, the inside, the outside, the cooks… I’ve never ever had an issue there about anything, ever. It just gives me 5 minutes. I love all my children to death, but it’s 24/7.”
Dude doesn’t leave Kerrie’s side. If she wants to go out for the night, she can’t, as Dude has to go with her. She has even taken him to work meetings before.
“I just panic that he’s going to stop breathing in his sleep, he is my little shadow.”
Not only does Little Harbour give Kerrie and Tony the chance to be alone, it gives Dude his independence too.
Kerrie said:
He loves it so much. He asks to have his birthday there; he wants to do everything there. He never wants to come home.
Dude loves the ball pit at Little Harbour and loves riding the bikes outside.
“No one says 'no' there. At home, he has to wait for 5 minutes to do something, or he might have to wait for his sister to finish with something to then have it. He’ll want an ice cream when he’s halfway through dinner, and it’s not like that there. If you want something, it is 'yes yes yes', you can do what you want all weekend. It’s lovely for him."
3 of Dude’s siblings often join him at his hospice stays. They all love it at Little Harbour and adore the Sibling Support Team, who they call ‘the best people on earth’. They enjoy the messy play and the Bingo on a Sunday.
Last time the family visited, it was Valentine’s Day, and Kerrie and Tony were able to go and have lunch together on their own, something they hadn’t been able to do for a long time.
Kerrie said: “I barely see Dude all weekend. He won’t sleep in the bedroom alone yet, he’ll go down there with the intention then I’ll hear a knock on the door, and I say, 'come on in then'.
“We’re truly grateful for all of you. It is lush, you feel like you’re on a separate island, it is just the most helpful place. We have continuously fundraised for this awesome place, and have raised around £3500. We will continue to help whenever and wherever possible.”