'I'm hurt and broken by the system' - Mother's heartbreak as the HSE advises her cerebral palsy son can't attend school (24 hours before his first day)
Published 15/05/2016 | 17:09
The mother of a boy with cerebral palsy has spoken out against her frustration with the lack of available services and funding in Ireland for families of children with special needs.
Shauna Gallagher (35) from Cliffoney, Sligo, had prepared her son Rory to start school last Wednesday.
Days before, the little boy with cerebal palsy had accompanied his mother to Dunnes Stores where he picked out his lunch box and school bag and was looking forward to his big day.
Then Shauna received a text message from the HSE saying that Rory could not attend the local Montessori as planned because there wasn't adequate funding for a special needs assistant.
The mother-of-three was devastated to learn that her little boy was being let down again after several earlier setbacks.
"I sat at the kitchen table and cried angry, bitter tears," said Shauna when speaking to Independent.ie
"It's been a battle since day one and I'm exhausted.
"We were told on April 28 that Rory had been accepted into the school and funding was provided for his special needs assistant. We'd been down to the school a number of times for interviews and to help Rory become familiar with his new setting. Everything seemed in order, as far as we were aware."
But then Shauna was advised that Rory needs two special needs assistants but the funding wasn't available.
He needs toilet assistance and child protection regulation states that two attendants are required.
"I understand that's the law and believe me, I think it's a necessary law but why weren't we told this from the start? Why was it left until the very last minute?," said Shauna.
"Rory was so excited. He couldn't wait to start school. He was so upset when he found out that it wasn't happening. He couldn't understand."
Shauna and her husband Gerry (37) believe that the HSE wants to send their son to a special needs school in Sligo town, which is about 25km away from their home.
"They want him in a wheelchair and on a bus to go to the school in Sligo town. He doesn't have any intellectual disbilities. He should be able to receive a mainstream education. He has a right to it," said Shauna.
This is the latest disappointment in a long-line of battles that the Gallagher family have endured with the HSE.
Shauna, who worked for the HSE as an administrative clerical assistant for 14 years, says she has been battling with the organisation since Rory was diagnosed with cerebral palsy at eight-months old.
Doctors in Ireland told the Gallagher family that their son would spend his life confined in a wheelchair. They also said he wouldn't learn to talk and would be legally blind.
"I knew there had to be other options so I did some research. I couldn't accept that this was my little boy's fate," said Shauna.
"I couldn't give up hope that something could be done."
The Gallaghers and local community organised a series of fundraisers to cover the cost of surgery for Rory in a hospital in St Louis, Missouri in the US.
"HSE officials told me it wouldn't work. It was so negative. They tried to convince me that my son would never walk and this doctor would be unable to help. I even heard someone use the term 'witch doctor' at one stage," said Shauna.
Doctors in the St Louis hospital found that Rory had perfect vision in one eye and 14 per cent in the other. They also found that his vision could be improved between 40 and 60 per cent.
His legs, which had been locked like scissors, were straightened after neuro-surgery severed incorrect signals from the brain.
Rory can stand with aids and is taking steps. His vision has also improved and he can fully understand what people are saying to him and even attempts some words of his own.
The only aid equipment that the HSE provided was a used prone-stander made in 1989 which dad Gerry welded and painted.
The HSE told the family that they didn't have the funds for a gait-trainer (to enable Rory to practice walking), so the family purchased a Kaye walker mobility aid in the US and a Rifton pacer on ebay for €350.
They also purchased night splints which Rory wears to bed to keep his legs straight.
"We couldn't afford that equipment. We were blessed to have the support of our local community through fundraising," explained Shauna.
Rory needs to return to the USA for further surgeries which will allow him further improve , he also requires a follow-up eye operation. The family are selling their Sligo home to afford the treatment.
"I am exhausted and suffering with depression but I can't give up.
"The HSE had my son wrote off but I've given him a real, beating chance at life," said Shauna.
"All I wish to do is enable him. I need to have Rory cared for in a caring, enabling environment. I want him to have his independence. I love him so much. He's a beautiful little boy and he brings me so much happiness but I want him to have the chances he deserves in life. It's not fair that we have to fight and beg for everything.
"I'm hurt and broken by the system," said Shauna.
The parents are looking to get their son into Ireland's only conductive education school (for children with cerebral palsy and motor disorders) Dungannon, Tyrone.
The couple's two children, Lily (11) and Kyle (16) have had to go without so much so that the family could provide for Rory.
"I wanted to sign Lily up for swimming lessons but we couldn't afford them. I know it's something small but she really wanted to learn. It's things like that. They adore their little brother but it's hard on them too," she said.
"I heard Brendan O'Connor on The Late Late Show on Friday night say there are about 15,000 children waiting for an assessment of needs in Ireland at the end of 2015.
"I know it's true because Rory is one of those children.
"He has been on a waiting list for the Central Remedial Clinic for three-and-a-half years. That's no fault of the CRC. We have been fighting to get him a place there but he needs to be referred from our local Area Intervention Service," she said.
"The funding just isn't there for the services we need and it's heartbreaking. It's a constant struggle but as a mum I won't give up. Rory is so driven and determined and I want to see him walk."
Rory's goal is to walk into primary school and Shauna believes if he receives the necessary surgeries at the right time, her son can realise his dreams.
Boxers Katie Taylor, Paddy Barnes and Michael Conlon are taking part in the Hell and Back endurance test in October to raise funds for Rory.
"We've been blessed to get their support. They've been absolutely fantastic," said Shauna.
"Paddy even said that when he wins the gold in Rio [Olympics] he'll be wearing his Team Rory wrist band."
For those interested in donating or helping organise a fundraiser for Rory, please visit www.gofundme.com/roryswishtowalk