DIY SOS star Nick Knowles heads to Weston-super-Mare this week where two struggling parents open up about the impact of their children’s debilitating conditions.
During this Thursday’s (December 3) episode of the popular BBC One series, host Nick and the team meet Cat and Chris, whose three children all have multiple rare illnesses and will soon be using wheelchairs full time.
Mum Cat explains that when Harry, now six, was nearing his first birthday, worrying signs developed.
DIY SOS host Nick Knowles heads to Weston-super-Mare
Cat says on the programme: “All of his milestones regressed, he stopped talking, he stopped eating.”
Doctors thought it might be autism, but they eventually diagnosed him with Ehlers-Danlos syndrome.
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As it’s a genetic condition, his older sister Lousia, now aged 14, and big brother Max, who is 11, were both tested.
DIY SOS kids have Friedrich’s ataxia and other conditions
Cat says: “All of a sudden, just before [Louisa’s] 13th birthday the ‘normal’ stopped. The consultant said, ‘We’re concerned about Louisa because she doesn’t walk in an age-appropriate manner and her balance and her gait are quite poor, and it’s not fitting with Ehlers-Danlos that we’re looking at.
“In the back of your mind, you’re absolutely petrified of what they will find.”
She did have Ehlers-Danlos but doctors discovered she had also inherited ataxia.
Both Louisa and Max were later diagnosed with Friedreich’s ataxia, one of the most severe forms of the condition.
It is aggressively degenerative and affects the limbs, nervous system and heart – and is usually life limiting.
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Dad Chris says of the children’s doctor appointments, “It’s always downhill, there’s never any good news” before covering his face and breaking down in tears.
Emotional Cat says: “I’m really strong most of the time but I always have a wobble on their birthdays. I hate it, I hate it because it’s one step nearer to… a bad day, it’s one birthday closer to that birthday and I hate it.”
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She adds: “There’s a lot of things with Friedreich’s, they say, you know, it affects some people’s speech, some get fine motor problems but everybody ends up as a full-time wheelchair user before their late teens.”
The family’s house isn’t suitable for wheelchair use and Nick and the team have just nine days to completely transform it. Will they manage?
– Watch the Weston-super-Mare episode of DIY SOS: The Big this Thursday (December 3) at 8pm on BBC One
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