‘My daughter was in constant pain but we kept getting the same answer’

A mother was repeatedly dismissed when told her exhausted teenage daughter was experiencing ‘growing pains’ until doctors discovered she had a rare and incurable condition. Daisy Fisher, 14, endured unexplained symptoms for months, leaving her family without answers as her health deteriorated.

Eventually, they received the heartbreaking diagnosis that she suffers from an aggressive neurological disorder which targets the nerves. Charcot–Marie–Tooth Type 4J (CMT4J) also causes muscle weakness, chronic pain and reduced mobility, particularly affecting the hands and feet.

Progressively, the condition is anticipated to render Daisy unable to walk and reliant on others for daily activities. No treatment is currently available within the UK.

Mother Adele Fisher, 45, from Barnsley, South Yorkshire, is raising funds for her daughter to participate in a gene therapy trial in America that specialists believe could slow or stop the disease’s advancement. She expressed her exasperation at being consistently told her daughter’s concerning symptoms were insignificant.

Adele explained: « Every time I tried to get her seen, her symptoms were always put down to her age or her hormones. We’d be told it was growing pains. »

While Daisy had frequently been poorly throughout her childhood, her mother became worried when the teenager started fainting, losing sensation in her toes and experiencing debilitating fatigue. Adele explained: « She started to lose quite a lot of weight and some of her mobility in her legs and feet. Then she started to feel like her feet were going numb and she couldn’t feel her toes.

« I knew something wasn’t right. When she stood up, she felt like she was going to faint. There were a lot of things that were raising alarm bells with me. »

Following more than a year of demanding answers, Adele rushed Daisy to A&E, which prompted a referral to neurology. Subsequently, Daisy underwent an extensive battery of examinations, including nerve conduction studies, MRIs, X-rays, neurological assessments and a sleep study.

Adele revealed the prolonged uncertainty devastated the family and compelled her to abandon her career in education to become Daisy’s full-time carer. The diagnosis eventually arrived during what the family anticipated would be a standard hospital consultation.

Adele recalled: « I was in shock, but I was relieved to know what was happening. Over the years I’ve felt like some sort of neurotic mum with the way people kept saying it was just growing pains. I knew deep down that there was something wrong. »

Adele learned there is presently no treatment available in the UK, but she uncovered a specialist research programme in the US examining the condition. This includes a gene therapy trial that could potentially decelerate or stop the disease’s advancement.

Daisy has now been enrolled as a patient at an Iowa centre where research is due to commence in preparation for a proposed clinical trial. While no participants have been chosen yet, Adele remains optimistic about the prospects. Meanwhile, Daisy continues her daily struggle against overwhelming tiredness and discomfort.

Her mother explained: « The fatigue is the most debilitating thing for Daisy. It doesn’t matter if she sleeps for eight hours or 18 hours, she’ll still be exhausted.

« But she keeps her spirits as high as she can and she’s not a moaner – she doesn’t complain, which is amazing when you think that she’s only 14. She really tries to keep positive. Daisy has a really funny, lovely personality and we still get to see snippets of that. »

The family has established a fundraising campaign to assist with crucial expenses such as specialist travel insurance, alongside financial assistance whilst Adele serves as Daisy’s full-time carer.