EastEnders stars be a part of charity soccer match to avoid wasting two-year-old Leo’s life
EastEnders stars Danny Dyer and Jake Wood are amongst celebrities lacing up their soccer boots to boost cash for a two-year-old boy with a uncommon dysfunction.
Born with a gene mutation that causes excessive muscle weak spot, little Leo is combating for his life in hospital after contracting pneumonia.
His mum, Lucinda Andrews, is fundraising £220,000 for groundbreaking analysis which she hopes will uncover a remedy for the situation – and save his life.
She is aware of of solely round 35 kids on the earth with the dysfunction affecting the TBCD gene, and wrote to a whole bunch of specilaists asking for assist.
Lucinda, 34, stated: “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.”
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Sunday’s soccer match is organised by Celebrity Soccer on the household’s native Chatham Town Football Club floor. It is predicted to be the most important fundraiser but for Lucinda’s charity, A Life for Leo Foundation.
Danny Dyer stated 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 well-known faces placing their greatest foot ahead embrace Calum Best (son of soccer legend George Best), Olympic sprinter Dwain Chambers, and X-Factor winner James Arthur.
Lucinda just lately obtained a WellChild award in recognition of her tireless campaigning and met Prince Harry, the charity’s patron. She stated: “He was so lovely and easy to talk to. He knew all about Leo.”
Leo had been making progress with physiotherapy, studying to assist his head and taking his first small steps with a particular body, till he caught an an infection and ended up in paediatric intensive care.
He is dangerously prone to infections as he doesn’t have the energy to clear the mucus from his lungs.
The typical life expectancy for kids with TBCD issues is simply three to 5 years. Often the muscle tissues round their lungs get weaker because the alerts telling them to breathe finally cease.
With the assistance of her household and buddies, Lucinda has raised £120,000 of the whole wanted to fund analysis by Californian biotech firm Rarebase.
It is analysing hundreds of medication already permitted within the UK for different situations comparable to epilepsy to search out one that might deal with Leo.
Samples of his blood had been shipped to the US. Lucinda stated: “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.
“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 recognized, Lucinda might want to persuade the NHS to prescribe it off-label.
Leo has obtained an “overwhelming” flood of assist and effectively needs, Lucinda stated. 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 assist Leo’s battle here.