A DEVASTATED mum has told how the HSE contacted her a week after her son’s death asking for his specially-crafted bed back.
Brenda O’Connell Barry, along with her husband Trevor, cared for their son Fionn until his passing on September 10 last aged seven.
Fionn suffered from a rare genetic condition, NAC1, and was the only person in Europe diagnosed with it.
This left him unable to walk or talk and often he could go for nights and nights without sleep — so he was dependent on his parents 24/7.
Parents Brenda and Trevor were told their “lion-hearted warrior” had a life span of no more that two years, but the family proved the medics wrong by providing love, care and support for to give him those extra years with them.
They worked extremely hard to develop Fionn over the years, so much so that while they were told he would never eat by the mouth, he had begun to do so recently. Prior to this he was peg fed.
Brenda, from Ballyhea near Charleville, Co Cork, suffers from Lupus herself and had to fight for every bit of support and help, especially in respect of night nursing care for her precious boy.
She said she was refused so much from the HSE over the years and had to fight for everything. And she revealed that just a week after Fionn was buried, the HSE contacted her to ask for the support bed Fionn had as they wanted it back.
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The person who rang sought the return of his sleep equipment and his wheelchair too, but Brenda told her the wheelchair was not HSE property as it was bought from the funds donated.
She said that what really shocked her was there was no empathy, no sympathising, just the request to get everything back the following day.
Brenda was asked “is that it” and said her response to that person was “no I would like your condolences on the death of my son”, to which the response was “oh ya OK!”
Brenda suffered from sleep deprivation because she had to stay up all night with her child, who slept very little because of overactive brain activity. Most nights he would cry and scream.
After years of battling, the HSE finally provided a night nurse service but this arrived too late to benefit the family as Fionn passed away two weeks after it began.
‘IT IS SO CRUEL’
Brenda said: “It is so cruel the way they make us beg for everything, even the most basic of human rights. It means we are going along and have to highlight the negativity of our children’s conditions instead of someone coming in and saying ‘isn’t he or she a beautiful child and you are doing a great job’.
“We are the ones saving the State and health service so much money by caring for our children. All we want is to keep them at home and love and cherish them for as long as we have them. All we need is some help and support and an opportunity to rest, after all if we get sick either mentally or physically who is going to care for our loved ones.
“There are very few places they can be cared for so that creates its own big problem. We just want basic human rights for our children whom we love so much and it is cruel to have us continuously having to beg for equipment and other things that can make their lives easier and more comfortable.”
Speaking about her battle with the HSE for services for Fionn she told Patricia Messenger on C103 FM: “The odds are stacked against parents of extremely sick children.”
DOCTORS ‘LIKE FAMILY’
Brenda said they are most grateful for support from family, friends and people all over Ireland and further afield who supported their fundraising appeals.
Brenda also said she’s grateful to the doctors who cared for Fionn, especially the home care nurses who were “like family.”
Brenda has vowed to continue Fionn’s legacy by helping family carers by donating the equipment they have acquired and the wheelchair will be provided as a stop gap for children whose families are waiting for the HSE to provide them with one.
She said: “I want to raise awareness with Family Carers Ireland of the struggles parents have to go through every day to help their sick children.”
You can follow the family’s story and contribute to the fundraising to help other sick children at Fight for Fionn on Facebook.
The HSE said they do not comment on individual cases but if anyone has a complaint about personnel or services they can make one to the HSE.