'The nurses have fallen in love with him' - Little Harry (1) is the only person in Ireland living with cruel genetic disorder
Three months ago, Maria and Denis O’Brien were told that their baby Harry had a rare genetic disorder.
Harry, now 18 months old, is one of two people in Ireland known to have the condition Genitopatellar.
“He will have disabilities but so far he’s surprised us all,” Maria (31) told independent.ie.
“It’s a very rare condition. We only got the diagnosis three months ago. There are so many genetic conditions out there that are undiagnosed. When we got the diagnosis it was very, very scary.”
“He’s the only one that we know of in the country with this condition.”
It’s been a long and harrowing road for Maria and Denis, who were told at a routine pregnancy scan that Harry was missing a part of his brain.
“At my 20-week scan we noticed that part of his brain was missing, the corpus callosum, the fibres connecting the left and right side of the brain. Poor Harry has no fibres.
“It was an awful shock to hear them say there’s something wrong with your baby’s brain. Then we noticed he had holes in his heart, so that indicated that he more than likely could have a syndrome.”
“He came out very, very weak. He was breathing on his own which was great, but his limbs were stiff.”
“I had to recover before I could see him. I was told he’s very, very sick, he has to be taken to Crumlin.”
The Kildare couple fought hard to bring Harry home from hospital, and now thanks to the Jack and Jill Foundation, Harry is thriving.
“We were in Crumlin for eight weeks. The medical team were brilliant but as you can imagine it was tough, I just wanted him home.”
“He was fed through a nasogastric (NG) tube and then he was about a week old and they said do you want to bath him. The first time I bathed him he stopped breathing, his brain was forgetting to tell him to breathe, but he did start breathing by himself again.”
“The consultants and nurses kept explaining, Maria he’s very, very sick, but I kept saying I want to bring him home.”
“The consultants said that he might not even know his own existence - you might have to resuscitate him. We were referred to Jack and Jill.”
“I thought we could do it on our own but we really couldn’t. It really was so frightening, with a baby with a condition, it was so hard. We couldn’t sleep at night, Harry had reflux and we were nervous he’d vomit into his mask and swallow it.”
“Having Jack and Jill coming in for a night when Denis was at work to have a full night’s sleep was just amazing,” she added.
Though Harry is still unable to crawl, walk or sit up, and he will have disabilities, he has fought against the odds.
“He’s such a happy baby. He interacts with everyone, he’s off the breathing machine at night, he’s off oxygen. He is fed through his stomach with a peg tube.”
“He’s starting to reach for toys now which we thought he’d never do. He smiles all the time, he’s such a happy baby.”
“Jack and Jill are absolute life savers. They’re even like friends now.”
There is so little known about Genitopatellar in Ireland that Harry’s parents were not given a prognosis for him. But Harry lives a very active life, attending playgroups from Monday to Wednesday, and going to Enable Ireland’s hydrotherapy pool, and seeing a cranial osteopath as well.
“Harry’s needs are complex. We were told that he might have seizures so we have to watch that.”
But Maria added: “He always wants to go outside. He loves the buggy, loves being outside, and loves the attention he gets. The nurses love him, they’ve all fallen in love with him.”
The Jack & Jill Children's Foundation is asking people to bake a cake to help the charity raise much needed funds for very sick children across the country through hosting bake sales and cake parties at home, in school and in work.
People can register now for a free baking pack at www.jackandjill.ie and to make a donation to Jack & Jill, with every €16 funding one hour of home nursing care for a sick child.