Baby Max can only survive with a constant supply of stem cells – Devon Live
Posted: May 30, 2017 at 12:43 pm
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A Devon family are swimming to Great Ormond Street Hospital to help a mum whose 15-month-old son has been diagnosed with very rare syndrome called Diskeratosis Congenita. Little Max Hilton's treatment is reliant on a steady supply of stem cell donors and after being around children with similar conditions Max's mum, Becca, is determined to encourage donors to come forward.
Through a touching Facebook group called Be There For Buzz Man Becca, has charted her son's journey and the difficulty they both face.
Becca's North Devon family have sprung into action to help spread the message that the UK needs more Stem Cell donors and to raise funds for the Antony Nolan Register, an organisation dedicated to researching stem cells and matching donors to those in need of help.
"We're delighted with the support we have received by so many people in aid of raising money for Anthony Nolan, including Reef, Tace and Aimee who are based in North Devon, have organised a charity swim called Swimming to Max; swimming 250 miles from Barnstaple to Romford, the distance between them and Max, over 20 weeks to raise as much as they can for the charity," said Becca.
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"Nobody ever expects their newborn child to be diagnosed with such a rare condition, to see him fighting every day is extremely painful, and to see so many brave children in the same ward really does showcase the need of more stem cell and bone marrow donors. Great Ormond Street Hospital are doing all they can, and we'd like to thank the staff for providing invaluable support to both Max and our family.
"For us, converting the negativity we have experienced with Max into making a positive impact for other patients in the same position will make our day.
"If just one person who reads our story decides to see if they're eligible, that could then continue to save a life. Please don't let it affect someone you love to then decide to register. There are so many patients waiting for suitable donors."
For Becca, telling Max's story is not just important for friends and family, but primarily to raise awareness of the desperate need for donors.
To see if you're eligible to donate stem cells, you must be 16 or over, and it is as easy as spitting in a cup to provide a saliva sample for Anthony Nolan to then assess eligibility to then donate - all done through a free sample kit sent via post, from their website.
Donating bone marrow and stem cells is not invasive at all; 9 out of 10 people donate stem cells via the bloodstream, in a procedure called peripheral blood stem cell collection. One in 10 people will have stem cells taken from the bone marrow itself, whilst under general anaesthetic.
Neither procedure hurts, and it's time more is done to increase the people on the register so patients, similar to Max, have a chance in recovering from their rare conditions with the help of those that are genetically matched to their blood type.
The Be There For Buzz Man Facebook page can be found at http://www.facebook.com/buzzman11, and to find out how to donate stem cells visit http://www.anthonynolan.org.
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Baby Max can only survive with a constant supply of stem cells - Devon Live
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