The family of a nine-year boy from Tallaght in Dublin have said they are devastated and angry at the refusal of the Health Service Executive to help fund specialist care, recommended for him at Great Ormond Street Children's Hospital in London.
JJ Kane has Down Syndrome, sleep apnoea, joint hypermobility and other health issues.
His joints get tired, hot and swollen after 15 minutes of walking and he uses a wheelchair in school and at home.
In a letter to the HSE on 12 October, his consultant paediatric rheumatologist at Crumlin Children's Hospital, Dr Orla Killeen recommended that JJ receive specialist inpatient treatment at Great Ormond St, as a similar programme is not available in Ireland for hypermobility.
She said Crumlin does not have the required trained and experienced staff.
His parents, Fran and Fergal Kane had applied to the HSE for financial assistance under the Treatment Abroad Scheme and had organised a treatment starting date of 31 October with Great Ormond Street.
Yesterday, they received a letter from the HSE refusing financial assistance towards his care.
The HSE claims the equivalent treatment and expertise is available in Ireland.
Mr Kane said the family cannot afford to pay for JJ to go to London.
The cost of treatment is around €10,000.
Family have right of appeal
The HSE has said that each applicant has the right to appeal a negative decision under the Treatment Abroad Scheme and will receive a response within ten working days.
The executive said it operates the scheme in accordance with EU guidelines and legislation for the scheme.
The HSE said each application is clinically reviewed by experts, whose medical opinion informs the decision as to whether overseas treatment is required.
When the treatment is available in Ireland, overseas travel for treatment is unnecessary.
It says the services of specialist physicians, physiotherapists, occupational therapists, podiatrists and hydrotherapists, are available within the paediatric hospitals in Ireland.
