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Teen's Rare Disease Ignored as 'Growing Pains'
30 Jan
Summary
- A rare incurable neurological disorder was misdiagnosed as growing pains.
- The condition, CMT4J, causes muscle weakness and chronic pain.
- Family seeks US gene therapy trial to slow disease progression.

For months, a mother's concerns about her daughter Daisy Fisher's deteriorating health were repeatedly dismissed as 'growing pains'. The 14-year-old's symptoms, including fainting and extreme exhaustion, were not taken seriously until a devastating diagnosis revealed an aggressive neurological disorder.
Daisy was diagnosed with Charcot-Marie-Tooth Type 4J (CMT4J), a rare and incurable condition that attacks the nerves, leading to muscle weakness, chronic pain, and reduced mobility. Doctors anticipate she will eventually lose the ability to walk and require full-time assistance.
Currently, no treatment exists in the UK for CMT4J. Daisy's mother, Adele Fisher, is now fundraising for her daughter to participate in a promising gene therapy trial in the US, which experts believe could halt or slow the disease's advancement.




