Family’s plea for little Matthew

THE Regency Hotel will be hosting a charity fundraiser this Friday (October 21) to help raise funds for 11-year-old Matthew McHugh and his family, from Ballymun, who are trying to buy a wheelchair accessible car to help transport the youngster around Dublin.

Matthew suffers from a rare illness called Hunter’s Syndrome (MPS II), a degenerative condition that has left him unable to talk, understand or swallow.

Matthew, who was diagnosed with the condition at just six months of age, has battled the disease for most of his life and mum Emma said that even trying to get her son in and out of the car has become a genuine burden for the two of them.

“On a good day it could take me five to ten minutes to get him in and out of the car, on a bad day it would take longer than that,” Emma told Northside People.

“His joints stiffen because the bones are enlarged. He’s losing his night vision. He’s losing his peripheral vision as well. He can’t see either side or what’s below him, so it’s really hard for him to lift his leg in or out of the car. 

“If we got a wheelchair accessible car it wouldn’t be as sore for him either because lifting the legs with the joints being stiff makes it really painful for him.”

Although he was diagnosed with the condition at just six months old, Matthew was a healthy toddler who learnt how to walk and talk before the condition really started to take hold of his body.

He was just the third child in Ireland to ever be diagnosed with Hunter’s Syndrome and is the only child currently in North Dublin suffering with the condition.

Emma says that there are now only 11 boys in the country with Hunter’s Syndrome and that it can be very isolating to know there is no real support network established for parents with children suffering from this condition.

“There’s no support group specifically for this condition,” Emma added.

“You’re alone and isolated. Where we are with Matthew now is that he’s actually the worst in Ireland out of all the boys so I’ve been really alone and isolated because Matthew has gone so far ahead of these other boys and so parents are actually talking to me and asking for advice.”

With Matthew’s physical ability to function progressively deteriorating as a result of the condition, Emma said that if they were able to get a wheelchair accessible car it would make an unbelievable difference.

“It would change our lives,” she explained.

“It would take an awful lot of pressure off Matthew as we’d just be able to wheel him into the car with the chair.” 

Matthew’s auntie, Laura, told Northside People that the Regency had been very accommodating in helping the fundraiser and that the hotel will be providing a raffle prize on the night to help with their efforts.

The Halloween fancy dress ball will take place in the Regency Hotel on Friday, October 21, at 8pm and will include a raffle, DJ and prizes for best dressed.

Tickets for the fundraiser are €10 and can be bought via the Matthew McHugh Facebook page.