Mum claims at-home workout revealed son had rare incurable disease as he couldn’t do simple exercise
A mum has told how she came to the heartbreaking realisation that her child has an incurable disease after he struggled to complete simple exercises while following Joe Wicks' at-home workouts.
Kelly Powell explained she first 'noticed something wasn't right' with her son Leo when he was just five-years-old, however, he only received the correct diagnosis a few months ago.
She had raised concerns about how the young lad was walking at the time but explained it wasn't investigated further as he was thriving academically.
But Kelly's fears resurfaced in 2020 when she noticed that her little boy was having difficulty when performing physical activities, which didn't phase his younger sister.
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The carer, 36, was one of the many parents who got her family into Joe Wicks' fitness livestreams during lockdown, which put a spotlight on Leo's continued struggles with his mobility.
Although his younger sister Emmie had no problem with the warmup exercises, it seemed that the schoolboy had some challenges when trying to complete star jumps.
"The workout was something we don't often do, which is why I was alarmed when we tried it for the first time," Kelly said.
"He didn't look like a star. It looked really wrong."
Warning signs
Kelly explained her son's arms and legs were 'everywhere', while his sibling, who is 14 months younger, was able to follow the steps in the 'PE With Joe' sessions without issue.
As this was also combined with the fact that she had picked up on Leo walking and sitting in 'strange' ways, it set alarm bells ringing for the mum.
Kelly recalled how the youngster seemed to have balance issues and would lean to one side as though he was 'drunk', while he also often sat with his legs behind his head 'like a pretzel'.
"Other people couldn't see it but I could," she continued. "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."
However, the mum soon realised that Leo's condition was continuing to deteriorate, and his struggles were now becoming a real danger.
Four years of back and forth
The schoolboy began falling more often and experienced a number of gnarly injuries over the years, including breaking his front tooth and badly bruising his face.
This proved to be the breaking point for Kelly.
She went on: "He came home with his face bruised, and I thought, I can't take this anymore. 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."
Four years after she first realised his star jumps were a little lacklustre, Kelly got some answers about why Leo was having so much difficulty.
In February of this year, he was evaluated by a paediatrician and underwent a series of tests - including on his eyes and ears - as well as an MRI scan.
The following month, doctors delivered the 'heart-sinking' news that Leo has a rare, incurable condition called Friedreich's Ataxia.
"I cried night and day, silently screaming to myself thinking how am I going to tell him," Kelly said.
"How do I tell an 11-year-old he could be in a wheelchair for the rest of his life?"
What is Friedreich's Ataxia?
Affecting at least 1 in every 50,000 people, sufferers usually start developing symptoms before the age of 25, and these only continue to grow gradually worse.
As well as a reduced life expectancy, people who have Friedreich's Ataxia slowly lose their mobility, speech and heart function.
Sufferers often encounter problems with balance and co-ordination, which results in wobbliness, clumsiness and frequent falls, according to the NHS.
The condition also causes slurred speech, increasing weakness in the legs, difficulty swallowing, and vision loss.
Leo was diagnosed with Friedreich's Ataxia, as well as scoliosis, kyphosis and peripheral neuropathy - and his mum admitted that she might not have voiced her concerns as early as she did if it wasn't for Joe Wicks' workout.
Now aged 11, Leo has limited mobility and can only walk short distances, as otherwise he is overwhelmed by spasms all over his body.
He is on the waitlist for a wheelchair and a walker, but Kelly says without any aids, her lad is left 'sat at home during half term' while his pals play out.
This is extra tough for Leo, as he loved being outdoors, heading on long walks and getting up close and personal with wildlife - however, he still dreams of working at a zoo or becoming a vet one day.
"He deals with everything with humour, his brilliant sense of humour is what's got us through," Kelly said of her son. "He falls over and laughs.
"He is a good, sweet boy. He likes playing games, loves nature, history, and animals."
A GoFundMe page has been launched to help fund Leo's physiotherapy sessions, which Kelly hopes will delay him from being confined to a wheelchair for as long as possible.
Contributions will also assist with the cost of a private medical treatment known as Skyclarys, as well as other therapies that will help improve Leo’s quality of life.
The fundraiser has already earned more than £2,500 in donations.
Olivia Burke