The exhausted mum of a teenage boy with a rare genetic condition who was denied home care help says her son has been failed by the HSE.
Karin Kenny’s boy Kielan has a condition that affects body and mind, making everyday tasks immensely difficult.
He needs round the clock care as he also has autism and dyspraxia, suffers with kidney problems and has had three major surgeries for scoliosis.
Read More: Fundraiser to help young Dublin woman with rare life-threatening condition ‘on par with cancer’
Kielan has an array of mental health issues and suffers from severe anxiety.
The boy, who lives in Dunshaughlin and attends school in Navan, wants to be in the shower and go out driving in the car several times a day for sensory reasons.
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.
Karin said: “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.
“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.
“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, seven 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.
“If he doesn’t get to do these things, he gets very distressed and most nights he doesn’t sleep.
“We have had to fight for everything since day one, it is exhausting.”
Kielan was diagnosed aged seven with 22q11.2 Deletion, a chromosomal syndrome that starts when a tiny part of one of the chromosomes is missing.
There are approximately 2,500 cases of the condition in Ireland.
The carer mum has become disillusioned with the whole system.
Karin said: “They referred me to Camhs 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 for them to start talking together, but the damage has been done and it has caused a cognitive decline.
“He has been failed by the system.”
In a statement the HSE said it could not comment on individual cases.
It went on to say that:“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.”
- A fundraising event for the 22q11 Ireland charity takes place on August 20, to donate search “Kielan Kenny Supporting 22q11 Charity” on GoFundMe
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