Mayo mother and son announced as Jack and Jill ambassadors

Cory Kilbane

Belmullet native Maria Flannery O’Brien and her baby boy Harry made a special appearance on Ireland AM, on TV3 on Wednesday last, as they launched the ‘Bake a Cake for Goodness Sake’ campaign for the Jack and Jill Foundation.
Maria’s son Harry, who is aged one, is supported by the Jack and Jill Foundation as he suffers from a very rare genetic disorder called Genitopatellar.
Speaking on TV3 last week Maria, who now lives in Sallins, Co Kildare, gave details of her son’s illness, whilst accompanied by the Chief Executive of the Jack and Jill Foundation, Hugo Jellett.
“He’s missing the middle part of the brain called the corpus callosum. What that is, is the fibres connecting the left and right side of your brain,” she said.
Extraordinarily, Harry is the first person in Ireland who has been diagnosed with this rare genetic disorder, following his diagnosis three months ago. There are also only 20 people across the world who have been officially diagnosed with the disorder.
For Harry, the disorder has left him facing a lot of challenges in his young life.
At the moment he is visually impaired, his muscle tone is weak and his doctors are not sure if he will ever possess the ability to walk.
“They’re not sure if he’ll walk or talk or crawl because it’s such an unknown syndrome,” she explained.

Early days
For Harry and his parents, the early days were a real struggle. They faced challenges in getting him home and setting up a required home care plan which involved a lot of medication and equipment.
“When he was born he was only six hours old and he was transferred to Crumlin. He was very poorly and the doctors didn’t know what the syndrome was. They had a few ideas, they did lots of tests but everything came back clear, so they were a bit dumbfounded,” she said.
“We didn’t realise how poorly Harry was until we got him home, and thank God we did have Jack and Jill nurses or we wouldn’t be able to do what we are doing now without them because without rest you can’t do anything really. Thank God for them, they helped us so much. Whatever symptoms he comes up with, there’s a consultant. He doesn’t have one specialist really, he has a whole team of medical professionals looking after him.
“The thing is with Jack and Jill nurses, when they come into our home, they’re like part of the family now and if I ever have any worries, even if they’re not there, if Harry does something that I don’t know is right, if I should go to A&E, I’ll ring them, I’ll take a video, I’ll say it to them, they’re absolutely amazing support to us.
“We’re trying to be his parents but we have to be his physio, his speech and language [therapist], his nurse and to get a bit of rest and a bit of respite means a whole lot,” said Maria.

Bake a cake
The Jack and Jill Foundation is asking people to bake a cake to help raise much-needed funds for very sick children across Mayo and the rest of the country.
People can register now for a free baking pack and make a donation to Jack and Jill at www.jackandjill.ie, with every €16 raised funding one hour of home nursing care for a sick child.
Each year, Jack and Jill, which was founded in 1997, must raise €3.5 million to provide its unique home nursing care and respite service delivered to sick children across the country.