‘We have to fight for everything
An exhausted mum of a teenage boy with a rare genetic condition who needs round the clock care has vented her anger at being denied home support saying her son has been failed by the HSE.
Karin Kenny's son Kielan (16) was diagnosed at aged 7 with 22q11.2 Deletion, a chromosomal syndrome that starts when a tiny part of one of the chromosomes is missing. There are more than 180 ways 22q11 can affect the body and mind, making everyday life task immensely difficult. There are approximately 2,500 cases of the condition in Ireland.
Kielan who attends St Ultan's Special School in Navan needs 24/7 care also has autism and dyspraxia, suffers with kidney problems and has had three major surgeries for scoliosis. The youngster has an array of mental health issues and suffers from severe anxiety.
Karin has described how Kielan who for sensory reasons wants to be in the shower and go out driving in the car several times a day, the teen also does not sleep at night.
Despite this gruelling routine and being allocated six hours of home care support per week, The HSE has told Karin and her husband Simon that they do not have the resources to provide the appropriate care due to Kielan's complex needs.
"When I asked, they said we have six hours a week based on him being back at school but when I keep asking about them they say he is a complex case and they can’t find anyone at the moment," said Karin.
"They did an emergency meeting for respite to say I have been put on a waiting list but it could take another nine months before we even get anything. They said they would also look at a support group called yap but they need special funding for it.
"I left my job in September 2021 due to Kielan having three spinal surgeries within five months. He has endless medical appointments.
"He is a 24-hour job, 7-days a week between wanting to go for drives continuously and we have to have the immersion on all day long for the endless showers, most nights he does not sleep.
"We are like walking zombies.
"We have had to fight for everything since day one, it is exhausting."
"You can't go to the bathroom, you can't watch TV. You have to switch everything off at night because he is up trying to eat raw things out of the fridge. It's 24/7 non stop. He is showering continuously in and out, he wants out to be out in the car all of the time too and if he doesn't get to do these things he gets very distressed.
"My husband and I are never allowed to go out together and there are no holidays together as a family. It’s like this continuous rollercoaster that you never get off and nobody understands until you are physically living in this situation.
"This also affects eldest son Aaron who had to do his leaving certificate while coping with all of Kielan's medical and mental health issues."
The Dunshaughlin woman who is originally from South Africa said the road from the start has been a difficult journey.
"He was diagnosed when he was seven, I couldn’t understand why he had continuous medical issues. When he got a cold he would be sick for weeks, he was six months behind in all his milestones as a baby, he had learning issues and he was battling to write and his hands didn’t seem to be strong enough.
"I thought he had dyslexia or dyspraxia but after talking to the paediatrician about everything she found a heart murmur and did an X-ray and found he had scoliosis and she also did a blood test which confirmed his 22q11 deletion."
Karin said she learned the devastating news by herself and if it wasn't for the support of an Irish charity, 22q11 Ireland, would not have been able to get through these tough years.
"I wasn't told to bring my husband or anything and I was just told that he had this condition. I went out to my car and cried. I googled 22q11 Ireland and met an inspirational lady called Anne Lawlor who has been there for us through all of Kielan's challenges."
Karin says in 2017 she begged the HSE to help her son who was suffering severe anxiety but she was just passed from pillar to post. The carer mum has become disillusioned with the whole system and believes the lack of early intervention has led Kielan to regress.
"They referred me to Camhs (Child and Adolescent Mental Health Services) who at the time didn't take me seriously and discharged him. I kept on fighting, I wrote to TDs, I wrote to everyone to just try and get him help.
"It took them five years to do anything from being pushed around the service Camhs and the disability team now called CDNT4 for them to start talking together, but the damage has been done, they pushed him around because he was too complex and it has caused a cognitive decline.
"He has been failed by the system."
The HSE said in a statement:
"The HSE is very much aware of the importance of respite for the families of both children and adults with disabilities. Respite has a key role in supporting families caring for children and adults with a disability. Providing respite supports for children and adults with disabilities and their families is a priority for the HSE.
"In 2022 the HSE Service Plan allocated funding to establish three additional specialist centre-based services to provide 4,032 respite nights to 90 children in addition to seven further respite services which will provide 9,408 nights to 245 children and adults in a full year. To provide 53 additional intensive respite support packages to children and young adults.
"This follows on from significant investment in respite services in 2021, when the HSE committing to delivering nine additional centre-based respite services, providing some 10,400 additional respite nights along with a range of alternative respite projects including Saturday clubs, breakaway schemes, and summer schemes for children and adults."