No school help for brave Brandon

THE father of a child with a rare medical condition has described his heartbreak at having to withdraw his son from the local primary school because there are no special needs supports for him.

The boy’s father Dallan has also taken the unusual step of calling the education welfare office to ask why he is not being investigated for keeping his child at home.

Five-year-old Brandon Morley-Doherty from Buncrana, Co Donegal, suffers from OEIS — a complex condition that affects just one-in-300,000 children. He has severe bowel and bladder problems, only one kidney and mild spina bifida. His identical twin brother, Arlen, was born without the condition.

Mr Doherty, who is Brandon’s full-time carer, says he has been “on a rollercoaster of emotions” since he withdrew Brandon from Scoil Iosagáin national school on December 23.

Mr Doherty made his decision after the HSE withdrew funding for Brandon’s childminder of several years to act as his special needs assistant within the local primary school.

While initially informed the child would receive the services of an in-house special needs assistant (SNA) at Scoil Iosagáin, one never materialised.

Mr Doherty, 41, is at pains to point out that his young son’s needs are of such a sensitive and personal nature, he requires the daily assistance of someone familiar with his personal care.

“I do reading and sums with him in the mornings and try to keep to a routine, but it’s not the same as him being at school with other children.

“He also misses his school-friends.”

Mr Doherty was told Scoil Iosagáin applied to the National Council for Special Education for an SNA (special needs assistant) for Brandon in September 2008. However, the application was made against the backdrop of a review of SNA resources nationally.

In a separate case, another father has spoken of his child’s plight. When Aislinn Hickey was born, her skin didn’t look right, says her father John.

If she was too hot, too cold, slightly bumped or irritated, Aislinn’s skin broke out into sore and often fluid-filled blisters all over her body.

Just over six months later, Aislinn, from Wexford, was diagnosed with a rare disease called mastocytosis.

Simply put, she has too many mast cells — located normally in all tissues in the body — and consequentially overreacts to things resulting in the blistering.

Mr Hickey says the condition is under control, and improving as she gets older.

“It was very difficult to manage when she was younger but thankfully she is like any normal eight-year-old now. The condition just needs to be managed properly.”

Speaking out as part of Rare Disease Week, a campaign to highlight rare diseases and disorders, Mr Hickey maintains talking about the problem with people who understand is a vital lifeline.

According to the Genetic and Rare Disorders Organisation (GRDO) — which is organising the campaign along with the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI) and the Medical Research Charities Group (MRCG) — more than 140,000 people suffer from rare diseases here and a further 200,000 have yet to be diagnosed.

Avril Daly, chairwoman of GRDO, says patients with rare disorders face significant issues such as delays in access to accurate diagnosis and appropriate treatment for their condition.

“There are many voluntary groups in Ireland and in the EU offering much needed information and support to those living with these conditions. Rare Disease Week gives us the opportunity to inform the public of these supports and to highlight,” she said.

Former Fair City actress, Joan Brosnan Walsh, who played Mags Kelly and was last year diagnosed with motor neurone disease, helped to launch the campaign. “When you discover that you have a rare disease, it’s life-changing and it’s hugely important to have access to accurate information as well as suitable support for both you and your family,” she said.

“In fact, getting diagnosed properly in the first place can often be a struggle. It took almost nine months for me to receive a diagnosis. I hope that through Rare Diseases Week, we can bring patients, policy makers and medics together to work towards a national plan for people with rare diseases in Ireland.”