Leo and his mother Lucinda, who need to fund £220,000 for critical research into an incredibly rare gene condition, will be joined on the field by celebrities.
In an effort to raise money for a two-year-old boy with a rare disease, celebs Danny Dyer and Jake Wood from EastEnders are among those lacing up their football boots.
Little Leo, who was born with a gene abnormality that causes severe muscle weakness, is in critical condition in the hospital after developing pneumonia.
His mother, Lucinda Andrews, is raising $220,000 to a ground-breaking study that she believes will find a treatment for the illness and save her son’s life.
Only about 35 children worldwide are known to have the condition affecting the TBCD gene, and she wrote to hundreds of specialists requesting assistance.
“I don’t doubt for a second that we will find a treatment, but my greatest concern is whether we will find it in time for Leo,” said Lucinda, 34. He is currently putting up a fierce battle.
The family’s neighborhood Chatham Town Football Club field will host the football game on Sunday. For Lucinda’s charity, the A Life for Leo Foundation, it is anticipated to be the largest fundraising event yet.
In a video message, Danny Dyer stated: “I’m playing this Sunday for a family whose young son requires some life-saving therapy, Chatham Town FC.
We’re trying to raise money because it’s a truly heartbreaking story. It’s going to be an incredible day, so come down and buy your tickets.”
Calum Best, the son of football icon George Best, Olympic sprinter Dwain Chambers, and X-Factor winner James Arthur are some more well-known figures who are putting their best foot forward.
Recently, Lucinda was honored with a WellChild award for her diligent advocacy efforts, and she also got to meet Prince Harry, the organization’s patron. He was so charming and easy to chat to, she said. He was well versed in Leo.
Prior to contracting an illness and ending up in pediatric intensive care, Leo had been making progress with his physical therapy, learning to support his head and taking his first tiny steps with a special frame.
As he lacks the strength to expel the mucus from his lungs, he is extremely prone to infections.
Children with TBCD abnormalities have a three to five year life expectancy on average. As the signals directing them to breathe finally fail, the muscles surrounding their lungs frequently weaken.
Lucinda has contributed £120,000 toward the required sum to support research by Californian biotech startup Rarebase with the assistance of her family and friends.
To locate a medicine that could treat Leo, researchers are analyzing thousands of others that have been given UK approval for treating illnesses including epilepsy.
His blood was sent in sample form to the US. It’s the safest approach to test medications, according to Lucinda, since even if they aren’t tested on Leo directly, they are tested on his cells in a petri dish, which is the closest we can come to understanding whether they will improve his function.
“We were among the first families to contribute to this study. By the end of the year, assuming there are no delays, we should know which medication has the best chance of restoring his gene function.
If a promising medicine is found, Lucinda will have to convince the NHS to recommend it outside of the guidelines.
According to Lucinda, Leo has received a “overwhelming” outpouring of love and well wishes. “I feel guilty sometimes, it’s hard to ask friends and family for help,” she continued.
“Asking the same individuals for aid repeatedly is challenging. However, as we’ve been raising money, we’ve come across some very remarkable people—selfless individuals who check in on Leo out of genuine concern.
Even though you wouldn’t want anyone to go on this trip, seeing such beautiful people in the world helps you to have a little confidence in humanity.
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