The subtle sign in my son’s home workout that revealed his heart could soon give out

An 11-year-old boy was diagnosed with a devastating degenerative disease after his mother noticed an alarming sign during his exercise routine.

Leo Powell became a fan of fitness guru Joe Wicks on social media in 2020 and enjoyed taking part in his online gym classes during lockdown.

But his mother Kelly, 36, became concerned when she saw him and his younger sister Emmie attempt the warm-up, which involved doing star jumps.

Leo’s arms and legs were “all over the place” and did not look like a star, said Mrs Powell, who is from Birmingham but now lives in Teignmouth, Devon.

‘His younger sister, who is 14 months younger than him, did perfectly. We were all laughing, but then I noticed something was wrong.”

Looking back now, there were even more signs that Leo’s development wasn’t quite right.

Mrs Powell, who works as a carer, remembers that Leo would sometimes lean to one side when he walked, ‘as if he were drunk’.

She added that he was very flexible and sat in a ‘weird’ way with his legs behind his head, like a ‘pretzel’.

It was only after watching her son struggle with star jumps during a session of Joe Wicks’ exercise class that Kelly Powell realized something was seriously wrong.

She had expressed her concerns to his primary school, which she reportedly rejected because he was doing well academically.

But after the starburst incident, she decided to seek medical help.

Doctors initially thought Leo had “flat feet” and needed special shoes, which Mrs Powell resisted.

“Other people couldn’t see it, but I could,” she said. ‘I felt something was wrong.

‘I don’t think the pediatrician took him seriously the first time. He said there was nothing wrong neurologically and that he only had flat feet and had to buy special shoes for that.

‘The school didn’t help because his problem wasn’t mental and he was doing well academically.

‘Last year my mother hugged Leo and noticed he was shaking. She said that didn’t look good.’

One afternoon Leo came home from school with a bruised face; his balance problems had led to a nasty fall.

Ultimately, Leo was diagnosed with Friedreich’s devastating ataxia, a genetic condition that affects the nerves.

‘He came home with a bruised face and I thought: I can’t handle this anymore, I don’t know when we’re going to see this physiotherapist.

‘I panicked. I called the doctor and cried on the phone saying I needed someone to see my son.

‘I felt helpless because I didn’t know what to do.’

A few weeks later came another fall; this time at night, which preceded an attack that caused him to chip his tooth.

It wasn’t until February 2024 that Leo was seen by a pediatrician and underwent several tests in hospital, including an MRI scan, hearing and eye tests.

Ultimately, the family received the ‘heartbreaking’ diagnosis of Friedreich’s ataxia – a hereditary condition that affects around one in 50,000 people and affects the body’s nerves and heart.

Symptoms include problems with walking and balance, slowed speech and palpitations, which worsen over time.

Mum Kelly said Leo’s balance and walking were also warning signs, as he would often lean to the side as if he were ‘drunk’.

It dramatically increases the risk of a range of life-threatening problems, including myocarditis and heart failure.

The condition is life-threatening, although many people with the condition live at least into their 30s, and some live into their 60s or even beyond.

The Powell family was told that Leo suffered from scoliosis, kyphosis (excessive rounding of the upper back) and peripheral neuropathy as a result of the condition.

“My heart sank when they told me,” Ms. Powell said. ‘I cried day and night, silently screaming at myself, thinking, how am I going to tell him. How do you tell an 11-year-old that he may be in a wheelchair for the rest of his life?

‘He took it very well, although he was obviously disappointed.

‘He arranges everything with his brilliant sense of humour. It’s what got us through. He falls over and laughs.

‘It couldn’t have happened to a worse person. We used to walk for hours and explore the area. He’s always the one asking to go for walks and explore, he loves wildlife.’

Today, Leo has limited mobility and can only walk short distances while waiting for a wheelchair and walker.

“Leo will sit at home during the term while other children go shopping and play, but he can’t make ends meet,” Ms. Powell said.

The family now has one GoFundMe page to raise money for Leo’s physiotherapy sessions, which will require him to use a wheelchair for as long as possible.

Mr Powell said: ‘He’s a good, sweet boy.

‘He loves games, loves nature, history and animals. He wants to make his dreams come true: working in a zoo or becoming a veterinarian.’