Help Leo overcome the challenges of friedreich’s ataxia

Hi, we are Rio & Lyndsey close friends of the Powell family, and we are reaching out to you about a very special young boy 11-year-old Leo Powell.

Earlier this year, Leo was diagnosed with Friedreich’s Ataxia (FA), a rare and progressive condition that affects the nervous system and muscles. FA is incurable, and it gradually takes away mobility, speech, and heart function. The progression of the disease is rapid, and while we don’t know exactly how it will affect Leo’s life, we know it will shorten his life expectancy significantly. Despite this, we are determined to help Leo live life to the fullest for as long as possible.

Leo was born in April 2013, a happy, healthy baby, meeting all his milestones on time. He took his first steps at 15 months, and his family had no reason to worry—until Leo was about five years old, when his mum, Kelly, noticed something wasn’t quite right with his walking. She raised her concerns with his teacher in Year 1, but because Leo was doing well academically, nothing was done at that time.

It wasn’t until 2020, during lockdown, that Kelly began to notice just how much Leo struggled with physical activities like star jumps during family workouts with Joe Wicks. Finally, she trusted her instincts and took Leo to the doctor. He was initially misdiagnosed with dyspraxia, but over the next couple of years, his condition worsened. Leo began falling more often, sometimes injuring himself badly, such as when he broke his front tooth or bruised his face after a fall.

In February 2024, after months of advocating for her son, Kelly was able to get a referral for further testing, and the family was given the devastating diagnosis of Friedreich’s Ataxia. In addition to FA, Leo also has scoliosis, kyphosis, and peripheral neuropathy, which together make everyday life increasingly difficult.

A Potential Hope: Skyclarys

One potential treatment for FA is Omaveloxolone (Skyclarys), a medication that could slow the progression of the disease. Unfortunately, it is not yet approved in the UK, although it’s available in the EU and USA. The family contacted the company that produces the drug, Biogen, earlier this year and were told that importing a month’s supply for Leo would cost thousands of pounds—something they simply cannot afford.

While the approval process for Skyclarys in the UK is ongoing, we don’t know when or if it will be made available. Leo’s family is holding out hope that the treatment can be accessed soon, but right now, the reality is that they need immediate support to help Leo with his daily challenges.

Leo’s Needs

Leo is waiting for critical mobility aids, including a wheelchair and walking frame, but due to long NHS waiting lists, he currently has no support to help him get around safely.

What Your Help Can Do

Leo’s family are doing everything they can to give him a good life despite his diagnosis. But there are huge financial and emotional challenges ahead. Here’s how your donations can make a difference:

• Specialist Equipment: Leo needs a wheelchair and walking frame, but these are delayed through the NHS. Your support can help cover the costs of this essential equipment.

• Private Physiotherapy and Personal Training: Leo has reached his NHS limit for physiotherapy sessions, but ongoing care is vital to help him maintain his strength. Private physiotherapy could help, but it’s expensive.

• Home Adaptations: Leo’s family need to make their home accessible for him as his mobility decreases.

• Travel Costs: The family regularly travels for Leo’s specialist appointments, including to Ryegate Children’s Centre in Sheffield, which incurs additional expenses.

• Therapies and Experiences: Every child deserves to enjoy life. Your donation will help Leo continue to do the things he loves, from playing Fortnite to spending time with his family outdoors.

Why This Matters

Leo is a kind, thoughtful boy who loves animals, nature, and playing video games. But the reality of FA means that simple joys—like walking in the park or going on family adventures—are becoming harder for him.

Leo’s family is committed to making his life as full and joyful as possible, but they can’t do it alone. Your support will help Leo get the care and equipment he needs and give him the best chance to live a happy, independent life.

How You Can Help

1. Donate: Every little bit helps. There is no set target, but no amount is too small to make a difference.

2. Share: Spread the word about Leo’s journey to help us reach more people who can make a difference.

3. Send Love: Keep Leo and his family in your thoughts and prayers as they face these challenges.

Thank you for reading Leo’s story and for supporting him on this difficult journey. Your kindness means the world to Leo, his family, and all of us.

With love and gratitude,

Rio & Lyndsey