Category: Ataxia UK

Posted on 14.11.2023

When no one else quite understands, Ataxia UK makes the world easier to navigate.

Parents often have a sixth sense that something is ‘not quite right’ with their child. And as Phoebe’s mum is also a nurse, she knew the warning signs which should not be ignored.

‘Phoebe was six when we noticed she seemed clumsier and was falling more often. It took about a year from going to the GP to getting a diagnosis.’ Phoebe’s Mum, Hannah

‘Initially, I thought she may have had a brain tumour and took her to our GP’, says Hannah. Phoebe was then seen in the dyspraxia clinic and offered physio, before being referred to a paediatrician, and then to a paediatric neurologist who finally diagnosed Friedreich’s ataxia (FA).

Trusted information is key

‘It can feel overwhelming, and the first few months or years can be difficult, says Hannah. And that’s especially true when your child is diagnosed with a little-understood condition like FA. That’s why a trusted source of support and information is so vital.

Today, Phoebe knows what her body can and can’t manage. And with regular training sessions, she has greatly improved her balance, stability, and strength. In fact Phoebe (now 12) has taken part in International All round Weightlifting Association (IAWA) competitions – and currently holds three world records in her age category.

Hannah is especially grateful for the support her family has received: ‘We have found Ataxia UK really helpful as a source of information and advice.’

Thank you so much for helping to provide this vital support

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