'I discovered son's rare condition when he tried Joe Wicks exercise'

A mum discovered her 11-year-old son had a rare, incurable disease after she noticed he struggled doing star jumps during a Joe Wicks home workout. Kelly Powell and her family were having a go at the popular HIIT workouts by 'Britain's online PE teacher' as a way to keep fit.

While Leo and his younger sister Emmie were excited to begin the warmup with star jumps, Kelly was concerned when she saw Leo's arms and legs were 'everywhere' and did not resemble a star. Kelly said that she first noticed Leo's struggles in 2019, when he began to walk 'strange' and started leaning on one side as if he was 'drunk'.

The 36-year-old mum also noticed he was very flexible and would sit in a 'weird' way with his legs behind his head, like a 'pretzel'. Kelly had expressed her concerns to his primary school, who reportedly dismissed them as he was doing well academically.

But after seeing Leo 'really struggling' with the star jumps during the Wicks workout, the mum-of-three made a doctor's appointment in 2020. It wasn't until May 2024, after years of consultations and tests, that Leo was finally diagnosed with Friedreich's Ataxia.

The rare condition affects the nervous system and gradually takes away mobility, speech and heart function - meaning people with the condition tend to have a shorter life expectancy. The mum admitted that she might not had voiced her concerns as early had it not been for Joe Wicks' workout.

Kelly, from Birmingham but now living in Teignmouth, Devon, said: "The workout was something we don't often do, which is why I was alarmed when we tried it for the first time. It was a new thing, everyone went crazy because Joe Wicks was going to do his first live PE session. The kids were excited.

"In the warmup, one of the things were star jumps. We noticed he was really struggling, arms and legs everywhere, he didn't look like a star. It looked really wrong. In comparison to seeing his little sister, who is 14 months younger than him and was doing it perfectly, we found it hilarious. We all laughed, but that's when I noticed something wasn't right.

"We're still waiting for a walker but it takes a long time and the waiting list for wheelchairs is ridiculous. Leo will be sitting at home during half term while other kids are going shopping and playing, but he can't get about."

Kelly said that doctors initially thought Leo had 'flat feet' and would need special shoes and believes his condition was not 'taken seriously' by doctors. Kelly said: "He used to sit really weird, with his legs behind his head, like a pretzel.

"He watched TV and went on his PlayStation like that. He had balance issues, and walked like he was drunk. Other people couldn't see it but I could. I could feel something wasn't right but the school disagreed.

"I don't think the paediatrician took him seriously the first time. He said there's nothing neurologically wrong and that he just had flat feet and should get some special shoes for that.

"The school didn't help because his problem was not mental and he was doing well academically. Last year my mum hugged Leo and noticed that he was twitching. She said that didn't look right.

"I said it's probably dyspraxia. She was worried it was Friedreich's Ataxia. I had never heard of it before. He came home with his face bruised, and I thought, I can't take this anymore, I don't know when we're going to see this physiotherapist.

"I was panicking. I called the doctor and cried on the phone, saying I need somebody to see my son. I felt helpless because I didn't know what to do."

While on the waiting list, Leo reportedly had his worst incidents, including falling out of bed while spasming during the night, falling over when shutting his eyes and chipping half of his front tooth. In February 2024 Leo was seen by a paediatrician and underwent multiple tests at hospital, including an MRI scan, hearing, and eye tests.

Kelly received the 'heart-sinking' diagnosis on 24 May 2024, including diagnosis of scoliosis, kyphosis and peripheral neuropathy, resulting from the condition. At the moment, Leo has limited mobility and can walk short distances, while he is on the waitlist for a wheelchair and walker. He cannot walk long distances, as he feels overwhelmed with spasms all over his body.

Kelly pointed out that Leo will not be able to enjoy Christmas break as much as other kids as he will not be able get around without a wheelchair. The 36-year-old carer said that Leo loved going for long walks and exploring nature, and that it could not have happened to a 'worse person'.

While Leo knows about the short life expectancy, he is taking everything with a 'smile on his face' and wants to work with animals when he grows up. Kelly said: "My heart sank when they told me, I cried night and day, silently screaming to myself thinking how am I going to tell him. How to tell an 11-year-old he could be in a wheelchair for the rest of his life?

"He took it really well, although he was obviously disappointed. He deals with everything with humour, his brilliant sense of humour is what's got us through. He falls over and laughs.

"It could not have happened to a worse person. We used to walk for hours and go on walks on the beach and explore. From all our children he is the one asking to go out on walks and explore, he loves wildlife.

"He's got such a good sense of humour, he is holding on to it even to this day, he is still laughing his way through it. He is a good, sweet boy. He likes playing games, loves nature, history, and animals. He wants to work at a zoo or be a vet."

A fundraiser has been set up on GoFundMe to help with Leo's physiotherapy sessions, as Kelly hopes it will delay him from being confined to a wheelchair for as long as possible. Donations will also assist with the cost of a private medical treatment called Skyclarys and other therapies to improve Leo’s quality of life.

You can donate to Leo's cause here: https://www.gofundme.com/f/help-leo-overcome-the-challenges-of-friedreichs-ataxia

WHAT IS FRIEDREICH'S ATAXIA?

Friedreich's Ataxia is the most common type of hereditary ataxia (caused by genes you've inherited). It's thought to affect at least 1 in every 50,000 people. Symptoms usually first develop before the age of 25, although it can develop in people much older than this.

The symptoms of Friedreich's ataxia usually get gradually worse over many years. People with the condition tend to have a shorter life expectancy than normal. Many people live until at least their 30s, and some can live into their 60s or beyond.

FA is incurable, and it gradually takes away mobility, speech, and heart function.