'My little boy is a real fighter, but he's still treated like a second-class citizen'
Jack McNiffe is the only child in the world to have both Down's Syndrome and CINCA Syndrome, writes Celine Naughton
At six years of age, Jack McNiffe can speak only one word and it's as clear and welcoming a sound as ever was heard.
"Hiya!" he says, then claps his hands and beams a smile that lights up the room in his Kildare home. The small blond, blue-eyed boy shuffles across the floor on his bottom and opens his toybox.
While his sister Molly (7) is perfectly healthy, Jack cannot walk or talk, his hearing is impaired, he has Down's Syndrome and is the only child in Ireland with CINCA Syndrome, a disease whose symptoms include headaches, chronic arthritis, skin rashes, high temperatures and abdominal cramps.
He is the only child in the world with both Down's and CINCA. Yet to see him sitting here, lifting out his Buzz Lightyear action figure to lay on the floor next to Homer Simpson and various DVDs, he looks like a contented and happy little boy.
He's smaller than most six-year-olds and there are other signs that he is not like other children his age, like the tube that runs from his stomach to a kiddie-sized backpack containing his food for the day, and the scar on his chest from the heart surgery he had as a baby.
Mum Aisling first discovered her baby had serious problems during a routine scan when she was 21 weeks pregnant. "I googled my life away, looking up all the possibilities," says Aisling. "I hoped he would have only Down's Syndrome. That wouldn't be so bad."
The day after Jack was born, he was taken to Our Lady's Children's Hospital, Crumlin.
"Little did I know it would become my home for the next three years," says Aisling. "Shortly after I took him home he was back in ICU with pneumonia. The following month he had a nine-hour operation on his heart.
"Then it was discovered that the food in his stomach was going back up to the lungs so, in effect, he was drowning in front of me. He got a peg tube inserted directly into his stomach at five months."
Jack was eventually diagnosed with CINCA Syndrome. From then, he started spending months at home, with a few days in hospital, rather than the other way round.
A "typical" day for the McNiffes begins at 8am when Jack wakes and Aisling switches off his night feed, changes his nappy and does physiotherapy to clear his chest before giving him his medications and starting the day feed. Then she gets Molly ready for school and gets Jack ready for pre-school.
"Some afternoons he has speech and language therapy or hydrotherapy and in between, there is a stream of hospital appointments to see various specialists.
"Molly has ballet and drama lessons and then there is homework, family stuff and dinner to be made.
"At 7pm Jack has an injection to control his CINCA symptoms. That's followed by his inhaler or nebuliser, then bedtime. At 9pm I give his medications through the peg, change his nappy and switch him to his night feed."
And the following morning, it starts all over again. For 10 nights a month, the HSE provides nursing cover, which gives Aisling a chance to meet friends or catch up with things she normally doesn't have time to do, like working on the Facebook page, Give Our Kids Their SNAs.
Now she has learned that these nursing hours are to be reviewed and she may lose some of them.
"Things have got a lot worse for families with special needs children in the last few years," says Aisling. "Despite Jack's disabilities, we have to apply for a medical card every year. I can't work outside the home and I often struggle to pay the bills.
"I moved into a bungalow in 2006 to accommodate Jack's needs, but I don't get a carer's allowance because the mortgage is too high.
"I've spoken to mums who waited six months for special shoes and by the time they arrived they were too small. We waited a year for Jack's cot.
"What's worst of all is waiting to find out whether he will be able to start school this September. He has a place at St Raphael's special school in Celbridge, but it's subject to the sanction of a Special Needs Assistant (SNA) and I don't know if he'll get it. The school already had four SNA posts cut last year.
"My precious little boy fought so hard to be here and we don't know how long we will have him with us. Every child has a right to an education, but I don't know whether the support he needs will be sanctioned. I'm worn out fighting for his rights while he's treated like a second-class citizen.
"I know Jack will never read or write; I just want him to learn how to communicate, whether through Lámh sign language or Picture Exchange Communication System (PECS) or both. PECS enables communication that wouldn't otherwise be possible. Jack would be able to say whether he'd like the book or the ball, for instance. He could make choices."
Clare Dempsey, chair of the Board of Management of St Raphael's, said: "St Raphael's Special School recognises and supports the constitutional right of every child to access an education. The Board of Management has offered school placements to 10 new pupils in September 2011.
"We have applied to the National Council for Special Education (NCSE) for the appropriate SNA support to meet the needs of all pupils enrolling in the forthcoming academic year. We expect to be advised of our allocation of teachers and SNAs for the forthcoming academic year this month."