Mum to meet MPs over cerebral palsy campaign

The mother of a young boy born with a form of cerebral palsy is meeting with MPs later as part of a campaign for more support for children diagnosed with the condition.

Natalie's six-year-old son Samuel was diagnosed with hemiplegia in 2020 after he had a stroke inside the womb, affecting the right-hand side of his body.

Early interventions such as therapy using the affected limbs can drastically improve the outcome for children, but misinformation and confusing advice online can be damaging, Natalie said.

"There was just so much differing information. There wasn't just a trusted source or anywhere where we could go to, and we were just floundering," she added.

Hemiplegia affects about 1 in every 1,000 children in the UK, impacting movement, co-ordination and everyday tasks such as eating, according to Evelina London Children's Hospital.

Samuel, from Harrogate, was diagnosed aged nine months after his parents noticed he was struggling to use his right arm.

"The first thing we did was Google life expectancy ,because we didn't know whether his life would be limited, we didn't know anything about it," she said.

"There was a lot of American information [online], there was lots of things talking about operations."

Since then, Natalie has worked with other parents to create a website and pamphlet with advice and support that she says she could not find easily online back in 2020.

The booklet, created with the help of an occupational therapist, was to fill in a perceived gap in information.

"It's got everything from how you might feel, and letting parents know it might be okay to feel how you feel, and it's perfectly normal and it isn't your fault, because that's the first thing you think, 'what have I done wrong?'

"It goes all the way through to how to get started with their child. This booklet will help parents advocate for their child, what treatments should they be getting, who should they be seeing and how frequently."

She hopes meeting with MPs will be a step towards getting the booklet adopted by NHS trusts to give out to parents whose children are diagnosed with hemiplegia.

Constraint-Induced Movement Therapy is offered to some children, but it is a "postcode lottery" on what treatments are available, Natalie said.

"A lot of children with hemiplegia need things like orthotics. If you go to Guy's and St Thomas' you get proper gait analysis, if I take him to our local hospital they have a look at him walking up and down a corridor.

"[Samuel] is a whirlwind, he's full of energy, he's got so much to offer and so much to give, but trying to find the right information out there and the right support was really, really hard, and still is really hard," she added.

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