The parents of two boys with cerebral palsy have launched a desperate appeal for €120,000 to pay for a life-changing treatment in the United States.
Michael and Ned Hickey were both born three months premature, almost exactly one year apart said mum Sinead, who told Independent.ie the young boys had been offered the “chance of an independent future” if they receive treatment in the US in the next eight months.
“We’ve a window of opportunity to ensure that our boys get the best care possible and we need to take it,” she said.
“Michael has Spastic Quadriplegia and is learning to walk at the moment. We’ve been offered a place at a hospital in St Louis [Missouri] where he can undergo a spinal procedure that will allow him to walk unaided and reduce the pain in his legs.”
The treatment offered to the Hickey family for 2 and a half year-old Michael is Selective Dorsal Rhizotomy, which involves cutting nerve fibers in the spinal cord so the muscles identified as causing spasticity are left inactive.
Combined with prolonged intense physical therapy afterwards, the treatment can often allow some cerebral palsy suffers to walk unaided.
The operation is not performed in Ireland, and the HSE will only recommend treatment in the UK for those aged eight and over, something Ms Hickey said the family could not accept.
“There’s a window for this when it’s optimal and that’s when children are aged between 2 and 3, while they’re learning to walk.
“We’ve met children who’ve had it done when they were in their teens, and often they've had to undergo other operations on their feet, knees and hips because they’ve been damaged over the years.
“If we go over in January, the SDR will be the only operation [Michael] will need because, at the moment, he has no other deformities. That’s why we want to go now.”
Ms Hickey said of the money raised, €60,000 would go towards the surgery needed for Michael, while the other €60,000 would go towards intense therapy for both boys.
The younger of the two, Ned has Periventricular Leukomalacia, which affects his balance and speech.
The full impact of the one-year-old's condition is still unknown as a formal diagnosis will not be given by the HSE until he is two, his mom said.
“We don’t know his full needs because there’s been no complete diagnosis. His damage is in the back of the brain.
“He has the strength to walk but he has no balance. He wouldn’t need the SDR treatment but he needs serious physiotherapy and speak and language work.”
Ms Hickey told Independent.ie that the family was not willing to wait for the HSE, as they were “aware of its policies regarding cereal palsy and SDR”.
“We haven’t approached the HSE for funding because we know if they decide [Michael] needs SDR, they wouldn’t send him until he’s at least eight. By then, his feet and legs could be seriously damaged.
“We brought up the treatment in the US, but none of the specialists we spoke to here had much to say about it.
“They think our son is too young and warned us that because it is a private hospital, they’re only interested in taking our money.
“We found this quite hard to take but after speaking to Irish parents whose children received SDR treatment at the hospital in St Louis, we made our decision.
“We’ve been in touch with five families who have been there and back, and their results have been amazing.
"One of the father’s helping us organise our own fundraising efforts couldn’t make a meeting because his son, who has cerebral palsy but underwent SDR treatment in the US, was taking part in his school’s sports day.”
So far, the family has raised close to €10,000 in their first week of fundraising and said they had no plans on slowing down.
For Michael to undergo his life-changing operation in January, his mum said they needed to paid its €60,000 costs by December.
"All we want is for Michael and Ned to get the best care possible and enjoy the freedom of being able to run, jump and play like any child," she said.
For those interested in donating or helping organise a fundraiser for Michael and Ned, visit www.thesundancekids.ie.