EastEnders stars Danny Dyer and Jake Wood are among celebrities lacing up their football boots to raise money for a two-year-old boy with a rare disorder.
Born with a gene mutation that causes extreme muscle weakness, little Leo is fighting for his life in hospital after contracting pneumonia.
His mum, Lucinda Andrews, is fundraising £220,000 for groundbreaking research which she hopes will discover a cure for the condition – and save his life.
She knows of only around 35 children in the world with the disorder affecting the TBCD gene, and wrote to hundreds of specilaists asking for help.
Lucinda, 34, said: “I don’t doubt for one minute that we will find a treatment but my huge fear is: ‘Are we going to get it in time for Leo?’ He is fighting really hard at the moment.”
Sunday’s football match is organised by Selebrity Soccer at the family’s local Chatham Town Football Club ground. It is expected to be the biggest fundraiser yet for Lucinda’s charity, A Life for Leo Foundation.
Danny Dyer said in a video message: “I’m playing this Sunday, Chatham Town FC, for a family whose little boy needs some life-saving treatment.
“It’s a really tragic story and we want to try to raise some money. Come down, get your tickets…it’s going to be an amazing day.”
Other famous faces putting their best foot forward include Calum Best (son of football legend George Best), Olympic sprinter Dwain Chambers, and X-Factor winner James Arthur.
Lucinda recently received a WellChild award in recognition of her tireless campaigning and met Prince Harry, the charity’s patron. She said: “He was so lovely and easy to talk to. He knew all about Leo.”
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Leo had been making progress with physiotherapy, learning to support his head and taking his first small steps with a special frame, until he caught an infection and ended up in paediatric intensive care.
He is dangerously susceptible to infections as he does not have the strength to clear the mucus from his lungs.
The typical life expectancy for children with TBCD disorders is just three to five years. Often the muscles around their lungs get weaker as the signals telling them to breathe eventually stop.
With the help of her family and friends, Lucinda has raised £120,000 of the total needed to fund research by Californian biotech company Rarebase.
It is analysing thousands of drugs already approved in the UK for other conditions such as epilepsy to find one that could treat Leo.
Samples of his blood were shipped to the US. Lucinda said: “It’s the safest way to trial medicines because although they’re not directly being trialled on Leo, they’re being trialled on his cells in a petri dish so it’s the closest we can get to accuracy in knowing if it will improve his function.
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“We were one of the first families to invest in this research. As long as there are no delays, we should have an answer by the end of the year as to which medicine would have the highest chance of improving his gene function.”
If a promising drug is identified, Lucinda will need to persuade the NHS to prescribe it off-label.
Leo has received an “overwhelming” flood of support and well wishes, Lucinda said. She added: “I feel guilty sometimes, it’s not easy asking friends and family for support.
“It’s hard to keep asking the same people to help. But during our fundraising journey we’ve met such amazing people, selfless people who check in on Leo because they genuinely care.
“As much as you wouldn’t wish this journey on anybody, it restores your faith in humanity a bit to see such amazing people out there.”
You can support Leo’s fight here.
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