A fundraiser for a life-changing home redesign for four-year-old Conall Shiels from Letterkenny was launched to transform his home which “isn’t suitable for his needs.”
The High Five for Conall campaign has been launched with the hope of raising €55,555 for a radical redesign of the Shiels family home, before Conall’s fifth birthday in June.
When Conall was still in the womb, he was diagnosed with sever hydrocephalus, a fluid build-up in the brain. His condition means he is non-verbal and is a wheelchair user. He is also peg fed; meaning most of his nutrition is pumped through a machine into his stomach.
Conall’s parents, Aoife and Kieran Shiels, were told that their son may not survive past pregnancy but, although he is in palliative care, he will celebrate his fifth birthday in June.
His mother Aoife said that after nine surgeries he is a very happy child and that he is drastically outliving the prognosis she received when Conall was born.
“He is a beautiful happy child. He generally only cries when he is in pain. For all intents and purposes, he shouldn’t be here but he’s coming five, please God, this June,” she said.
“Myself and Kieran were told that there was a huge possibility that he wouldn’t survive the pregnancy, never mind the birth. We had a follow up appointment in Holles Street where they confirmed that his brain damage was quite severe and that he might not survive the birth.
“He was extremely ill when he was born but he managed to pull through. We were told at the time ‘just take him home and enjoy him for as long as you have him’. It was extremely traumatic for the family and my two other kids to hear that diagnosis.
“We took him home but in the short period of time that he was at home he deteriorated rapidly. The pressure and fluid in his brain increased rapidly and he was on morphine and just really, really, really in pain.”
Conall did pull through however, and despite frequent hospital visits, he enjoys periods of good health.
As he gets older and bigger however, his needs are becoming more demanding and Aoife said that that his home is increasingly becoming inadequate to meet these demands. Both Aoife and Kieran are part-time teachers and although they are above the means-based threshold for grants, they are financially unable to provide Conall with the facilities needed for his care.
“As Conall is getting older his care needs and his physical needs are getting more demanding, so our home at the moment just isn’t suitable for his needs,” Aoife said.
“At the moment my husband has to literally carry him up the stairs and he is basically being hosed down in the shower because the equipment we have received from the HSE, a chair and shower equipment, just doesn’t suit Conall, because he has no head control and he just slumps down, he can’t sit up straight.
“He needs his room adapted, he needs a ceiling hoist and he needs a wet room just because he is getting bigger.
“The equipment itself is going to be really expensive. For example the ceiling track hoist in order to transport him from his bedroom to the wet room, those devices can be anything up to €10,000.”
In the month that the GoFundMe page has been active almost €25,000 has been raised for Conall’s home transformation. A local electrician, plumber and tiler have offered their craft for free and Anne Touhy, an interior designer, has also volunteered her services and is running an interior design master class, the proceeds of which will go to Conall’s cause.
Conall is due to start school in September and Aoife said that another part of the campaign is to have a nurse employed at the school, ‘Little Angels’, which is for children like Conall who have complex medical care needs.
“Unfortunately there is no nurse on site,” she said.
“Should children have seizures or need medical care, there is no nurse, so it’s so important that we get a nurse for some piece of mind for the parents heading off to school.
“There are already nearly 5,000 signatures on a petition about this and we have been onto minister (Joe) McHugh.
“Whatever happens to Conall in the future, as I said he is a palliative care patient, I would just love it that his legacy was that we managed to get a nurse in situ for that school for the other kids.”
If you would like to donate to Conall’s fundraiser, you can do so here
If you would like to sign the petition for a nurse in Conall’s future school you can do so on this link;