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29.
May
2017.
SAVE LIVES BY JOINING THE ANTHONY NOLAN REGISTER


Anthony Nolan.jpg


 

Press release


Date: 29/05/2017


SAVE LIVES BY JOINING THE ANTHONY NOLAN REGISTER


15 month old Max Hilton has been diagnosed with a very rare syndrome called Diskeratosis Congenita, and a Facebook Page, Be there for Buzz Man, showcasing his journey through treatments as he stays at Great Ormond Street Hospital has spread nationally to promote the importance of joining the Anthony Nolan Stem Cell and Bone Marrow register.


Becca Hilton, mother to Max, has created this page to raise awareness of the need of Stem Cell donors, as being surrounded by children in a similar life-threatening position at Great Ormond Street Hospital is heartbreaking, and brings to light the consequences of not having enough donors on the registers to help patients with rare conditions that are waiting for suitable donors to come forward.


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’s 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. 1 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.


Becca Hilton has said, “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.


“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) in 20 weeks to raise as much as they can for the charity.


“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.”


Media contact:

For media enquires, please contact Amy Paternoster on 07944 360631 or email amy@bluefrogmedia.co.uk


Note to editors:

Anything you can do to help promote this story, please do so. It really is appreciated, and if one donor comes forward from every story, this could save many lives. Should you require any additional information about this story, please feel free to get in touch.


The Be there for Buzz Man Facebook page can be found here: https://www.facebook.com/buzzman11/


Sources:


* Anthony Nolan:   https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells