A YOUNG Teignbridge boy is remaining positive despite having been diagnosed with an incurable neurodegenerative disorder that will likely shorten his life.
Eleven-year-old Leo Powell from Teignmouth was diagnosed with Friedreich's ataxia (FA) earlier this year, after having been misdiagnosed with dyspraxia.
Thought to affect at least one in every 50,000 people, FA is a rare and progressive condition that affects the nervous system and muscles.
Born in 2013, Leo gave his Kelly and Chris Powell, parents no reason to worry until he was around five-years-old when mum Kelly noticed that her son sometimes had issues walking, but it wasn’t until 2020 that Kelly noticed how much Leo struggled with physical activity generally.
Fast forward to 2024 and Leo, who started at Teignmouth Community School in September, was officially diagnosed with FA.
‘It’s horrible and we have had to tell Leo some horrible things’ Kelly said.
‘It took six months for the diagnosis to come through and I couldn't spent that time not telling him what the doctors thought it was.
‘I have a child who believes in Father Christmas, and I have to tell him that Father Christmas can’t fix this.
‘As time has gone on, he’s Googled it and he’s seen that there is a life expectancy in the 20s and 30s.
‘Only last week, he said “Mum, what age do you think I will live to?”
‘But, I tell you what, he says it all with a great big grin on his face - it really shocked me.
‘I was really worried about telling him, but the way he has taken it is giving us all strength to get through this, he has been amazing’ Kelly said.
Leo was been enjoying secondary school, not least because he’s treated like a VIP, as the school took the decision to hold an assembly informing its staff and pupils of Leo’s condition.
There is no cure for Friedreich's ataxia, although some medicines such as Omaveloxolone, sold under the brand name Skyclarys have shown promise. The drug is used European Union and the United States, but has yet to be approved for use in the UK.
In the meantime, Leo needs immediate, day-to-day support with the challenges that he faces.
For example, Leo is waiting for 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.
And this is where a fundraising page set up to help Leo comes in.
Friends of the family, Rio Goodfellow and Lyndsey Jolly, set up the GoFundMe page to help cover the costs of care and equipment Leo needs.
‘Leo’s family is committed to making his life as full and joyful as possible, but they can’t do it alone,’ Rio and Lyndsey said.
‘Your support will help Leo get the care and equipment he needs and give him the best chance to live a happy, independent life.’
To date, the page has raised more than £2,000.
‘Their kindness and generosity mean the world to us and are making such a difference in Leo’s life.’