A non-uniform day at Larne High School has raised £400 for the MPS Society.
A cheque was presented by Gail Hughes and her daughter Maria, a year 10 pupil, at a special assembly in the school, last Wednesday.
A total of £1,300 has been raised by Larne High, Moyle Primary, AES Ballylumford and Larne Skills.
Gail is the mother of Junathon, a past pupil, now 19, who suffers from a rare genetic metabolic condition.
Junathon is the only person in Northern Ireland who is affected by a particular form of mucopolysaccharide (MPS) disease of which there are 40 sufferers in the province.
Despite battling chronic pain, Junathon has proceeded to gain a work placement through Larne Skills with Pollock Lifts in Carrickfergus.
He requires enzyme replacement therapy and attends a specialist pain management clinic.
Junathon first showed signs of the disease at just three years old when he collapsed whilst playing and was unable to walk.
His terrified mother got him medical help immediately but it was another 13 years before MPS was diagnosed.
Despite years of hospital and GP appointments, collapsing with pain all over his body, unable to walk, sometimes move or climb stairs and unable to sleep, doctors failed to diagnose his condition.
“I remember carrying him into the Royal Victoria Hospital in Belfast. He was always getting tests done and examinations. It was a relief when he was finally diagnosed,” said Gail.
“He was getting worse and he was finally sent to genetics specialist Dr Fiona Stewart, at the City Hospital, in Belfast.”
It was Dr Stewart who finally identified MPS and Junathon was referred to the specialist Willink Unit, at St. Mary’s Hospital, in Manchester.
The enzyme therapy treatment which he receives protects Junathon’s organs although his spine has already been damaged.
“The pain is the hardest thing to deal with, but he just gets on with it,” says Gail.
Despite the debilitating condition, Junathon is expected to have a normal life expectancy.
Gail says that the support she has received from the MPS Society has been invaluable.
She indicated that the charity’s support officer and genetic counsellor Alison Wilson is “always at the end of the phone”.
“I can contact her at anytime and can talk to her about anything. I don’t know what I would have done without the MPS Society.” said Gail.
“The MPS Society has been a huge support to us over the years. We want to give a little back by raising money for the charity.
“We are so grateful for the support shown by the people of Larne for all their efforts,” added Gail
John Armstrong, principal of Larne High School, said: “Junathon is still part of the school community.
No matter how many years since you have left, you are still part of Larne High,” Mr Armstrong said.
The MPS Society is the only registered UK charity providing professional support to children and adults suffering from 24 mucopolysaccharide and related diseases. These diseases are rare genetic conditions causing progressive physical disability. Thanks to research supported by the MPS Society, there are now treatments for some of the diseases which although not a cure can help delay the progression of the disease.
Alison Wilson said: “The MPS Society looks after a group of patients with very rare matabolic conditions. The MPS provides a support service for thse families so that they have someone to turn to when they most need it.
“The charity is also involved in research and clinical trials of new treatments. The MPS Society could not do what we do without the kind donations of fundraisers. We would like to thank the people of Larne for all their efforts.”
The MPS Society can be contacted at www.mpssociety.org.uk or call the MPS Society on 0845 3899901.