HSE has taken our son's dignity
Couple say their son has been let down by the HSE
A young couple from Oylegate have expressed anger and frustration at the HSE 'and the general system' for failing their son who is affected by an extremely rare medical condition.
Darren and Julie Sheil's son TJ has a condition called lissencephaly which is more commonly referred to as 'smooth brain'.
As as result of his condition TJ, who is also affected by epilepsy, is mentally disabled and will never be able to be toilet trained.
He is a big child and despite being two-and-a-half he is currently wearing clothes suitable for four to five-year-olds.
However, when this paper visited him at his home his parents said the HSE have told them he will not be eligible for appropriately sized nappies until he is three years of age.
'The problem we have now is that he's outgrown conventional nappies but the HSE say he won't get the larger ones until he's three and what are we supposed to do until then,' said Julie.
The couple also pointed out they don't want to be going public with their predicament but feel they have no choice because there might be other people in a similar situation who are not in a position to go public.
'We can because there will be no repercussions as he doesn't have siblings at the moment,' said Julie.
'If he had a brother or sister we would be more hesitant because going public might lead to them being targeted in school etc. but what if there are other people out there in a similar situation but who do have other children and because of that they can't go public,' said Darren.
'We just feel the system is wrong and the HSE and the system has failed our son,' said Julie.
'Surely a basic right of everyone is that they retain their dignity and if TJ soils himself and the nappies he has just aren't big enough then he sometimes destroys his clothes then that's not giving him his dignity,' she added.
The couple were told that TJ would never show emotion but that's proven not to be the case.
'He recognises us and can do little things like blow a kiss and he smiles at you,' said Julie.
'It makes us angry that he has to wait until he's three before he can get nappies that will top him soiling himself,' she added.
'Why is there an age-limit on this when it's obvious he needs them now not when he's three.'
TJ is one of only a handful of people with the condition and while they had secured a place for him in a local special needs school they were informed last week that the facility is to become mainstream and that has led to more difficulties.
'We were told that because it will be mainstream he will need a nurse with him on-site while he is there,' said Julie.
TJ requires a c-pap at night to help him sleep and if he suffers a seizure or his oxygen levels go down he also requires use of the c-pap to help regulate his breathing again.
However, the family have received help from the Jack & Jill Foundation nurses for which they are very grateful.
'They have been brilliant to us and we really appreciate their help,' said Julie.
Darren then pointed out the irony of the fact that the foundation is a non-funded charity organisation whereas the HSE is the state health body and it's the one that is causing their son problems.
They pointed out that the HSE staff locally have been very good but they are also constrained by regulations and rules.
'It's the system that's the problem and that's why we're highlighting out case,' said Julie.
'We just want our son's basic right to his dignity restored,' she added.
The couple have contacted local representatives about their situation too and have received some help from Cllr Jackser Owens who visited them in their home.
'They all said they would look into it and in fairness to Cllr Owens he did come out and visit us here but at the end of the day we shouldn't be in this position and nor should TJ.