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 social media fitness guru Joe Wicks in 2020 and enjoyed taking part in his online PE classes while in lockdown.
But his mother Kelly, 36, became concerned when she saw him and his younger sister Emmie attempt the warm-up, which included star jumps.
Leo’s arms and legs were “everywhere” and he didn’t look like a star, said Powell, who is from Birmingham but now lives in Teignmouth, Devon.
‘His younger sister, who is 14 months younger than him, was doing it perfectly. We all laughed, but that’s when I realized something wasn’t right.’
Now, looking back, there were other signs that Leo’s development was not quite right.
Powell, who works as a caregiver, recalled that Leo would sometimes lean to one side when he walked, “like he was drunk.”
She added that he was very flexible and sat in a “strange” way with his legs behind his head, like a “pretzel.”
Only after watching her son struggle with star jumps during a session of Joe Wicks’ exercise class did Kelly Powell realize something was seriously wrong.
She had expressed her concerns to her elementary school, who reportedly dismissed her because she was doing well academically.
But after the star jump incident, he decided to seek medical help.
Initially, doctors thought Leo had “flat feet” and would need special shoes, something Powell objected to.
“Other people couldn’t see it, but I could,” he said. ‘I could feel something wasn’t right.
‘I don’t think the pediatrician took it seriously the first time. He said there is nothing neurologically wrong and that I just had flat feet and that I should get some special shoes for that.
‘School didn’t help because his problem wasn’t mental and he was doing well academically.
‘Last year, my mother hugged Leo and noticed that 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 caused him to fall badly.
Eventually, Leo was diagnosed with devastating Friedreich’s ataxia, a genetic condition that attacks the nerves.
“He came home with a bruised face and I thought, I can’t take it anymore, I don’t know when we are going to see this physiotherapist.
‘I was panicking. I called the doctor and cried on the phone, saying I need someone to see my son.
“I felt helpless because I didn’t know what to do.”
A few weeks later there was another fall; this time at night, which preceded a seizure that caused him to break a tooth.
It wasn’t until February 2024 that Leo was seen by a pediatrician and underwent multiple tests at the hospital, including an MRI, hearing and eye tests.
Finally, the family received the “heartbreaking” diagnosis of Friedreich’s ataxia, an inherited disease that affects approximately one in 50,000 people and affects the body’s nerves and heart.
Symptoms include problems walking and maintaining balance, slow speech, and heart palpitations, which worsen over time.
Mum Kelly said Leo’s balance and walk were also warning signs as he often leaned to one side as if he were “drunk”.
It dramatically increases the risk of a number of life-threatening problems, such as myocarditis and heart failure.
The condition is life-limiting, although many people who suffer from it live to at least age 30, and some to age 60 or more.
The Powell family was told that Leo suffered from scoliosis, kyphosis (excessive rounding of the upper back), and peripheral neuropathy as a result of this condition.
“My heart sank when they told me,” Mrs. Powell said. ‘I cried day and night, screaming silently thinking how I was going to tell him. How do you tell an 11-year-old that he could be in a wheelchair for the rest of his life?
“He took it very well, although he was obviously disappointed.
‘He approaches everything with his brilliant sense of humour. It’s what helped us get ahead. He falls down and laughs.
‘It couldn’t have happened to a worse person. We used to walk for hours and explore. He’s always the one asking to go out for a walk 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 be sitting at home during half-term while other children go shopping and play, but he can’t move,” Mrs Powell said.
The family has now created a GoFundMe page to help raise money for Leo’s physiotherapy sessions, which is believed to delay the need for a wheelchair for as long as possible.
Mr Powell said: “He’s a good, sweet boy.”
‘He likes to play, he loves nature, history and animals. He wants to fulfill his dream of working in a zoo or becoming a veterinarian.’