Jewish mum-of-three launches cerebral palsy charity for adults

A Jewish mother-of-three from Whetstone who has cerebral palsy is appealing for the Jewish community’s support as she launches a charity dedicated to helping adults with the condition.

Emma Livingstone, 42, a speech and language therapist who recently had to give up work, says she wants Adult Cerebral Palsy Hub to be a go-to resource for adults, in part because the condition is seen as something children suffer with.

Cerebral palsy (CP) is a neurological condition stemming from a brain injury incurred before, during, or after birth up, until the age of two. It affects 111,000 people, whose symptoms differ. Emma’s is considered “mild” but she struggles with coordination and balance, with different leg lengths and under-developed muscles.

“It means the other muscles over-compensate which leads to chronic fatigue and exhaustion, because the other muscles are working twice as hard,” she explains.

Emma also has early-onset arthritis stemming from the malformation of her hip sockets, which led recently to a left hip replacement and right-hip reconstructive surgery in 2015, when her youngest was two years old.

“The hospital rehab should take three days but mine took three weeks,” she says. “I now walk with crutches. Others sufferers struggle to speak or swallow. It’s a condition that requires management throughout life.”

CP means the body ages prematurely and so declines earlier, but she says “services aren’t really in place to support that,” adding: “It’s not a progressive condition but it does have a degenerative impact only now being properly understood.”

Although a similar number of Brits suffer from MS and Parkinson’s, the difference in support and information between these and CP is huge, she says, and while SCOPE touches on CP, they’re not experts. “Large numbers are suffering in silence.”

Of her own experience, she said: “I didn’t have a consultant or anyone to go to when things were getting bad. You rely on the knowledge of your GPs but they don’t really know where to send you. At one point I was sent to the polio clinic!”

Parenting can be a challenge too, says Emma. “We’ve installed a lift in the house and widened the doors for when I’m in a chair, but it was particularly difficult after my surgery. It was difficult to access information and resources, especially for those with orthopaedic conditions too. That’s what made me think we need a hub.”

As well as amalgamating resources and providing a platform from which to lobby for more resources and understanding, the online site will also include a virtual hub allowing those with CP to share tips and experiences.

The charity launches this Sunday, with a comedy night at the Chicken Shed Theatre. A raft of comedians, many of whom have CP themselves, are due to appear. The plan is to raise £5,000 and Emma says her children – Natan, 10, Libby 8, and Callum, 4, who attend Wolfson Hillel – all want to come along, ahead of a triathlon next year to raise money.

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