Ríon Henry (centre) with his friends Noah and Lucy Kate and the rest of Miss Moore's first class at Whitecross National School with the big cheque they raised for the POH Association. Photo: Andy Spearman.
A first class pupil at Whitecross National School in Julianstown who suffers from a very rare and debilitating disease has raised almost €1500 for charity.
Seven year old Ríon Henry is a happy-go-lucky little boy who lives in Ballygarth Manor in Julianstown with his parents Cathy and Mick, he is the youngest of five children with two sisters and two brothers.
Ríon loves school because, like most seven year olds, that’s where he meets his friends. Unfortunately however, Ríon is not like most seven year olds. In fact he is almost unique because he is of one of just 100 people worldwide, the only one in Ireland, living with a condition called Progressive Osseous Heteroplasia or POH.
POH is a genetic condition in which the body makes extra bone in locations where bone should not form. Extra bone develops inside skin, subcutaneous tissue (fat tissue beneath the skin), muscles, tendons, and ligaments.
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This “out of place extra bone formation” is referred to as heterotopic ossification and the extra bone formation near the joints may lead to stiffness, locking, and permanent immobility.
Like most children with POH, Ríon began displaying symptoms during his first few months of life. His Mammy, Kathy, noticed an unusual mark on his leg when he was a little baby and when he was just six weeks old he was referred to Crumlin Children’s Hospital where a doctor suspected that he had the extremely rare condition.
When he was six months old he underwent a procedure called a punch biopsy and the doctor’s worst fears were confirmed. All that could be done was to watch and hope.
Until the age of six Ríon was able to get around without too much trouble. Hydrotherapy treatment helped with the pain and improved his mobility, but more recently the disease has progressed and he has had to start using a wheelchair more frequently.
Despite his condition, which leaves him in pain for much of the time, Ríon is always cheerful and positive and certainly not the type to let things get him down so last month, with help from his Mam and Dad, he organised a fundraiser in the school for the POH Association wo are funding research aimed at finding a cure for the condition. He asked permission for the schoolchildren to have a no-uniform day and to donate €2 each.
Yesterday Ríon and his friends in Miss Moore’s class presented a cheque for €1439.91 to the school who will in turn forward it to the POH Association.
If you would like to find out more about POH and perhaps make a donation to the POHA association you can do so at www.pohdisease.org