Finn’s mother running out of help
“At the thought of getting Finn the right support, I’d run five marathons back-to-back,” declares Sinead Lucey.
Though finding time to train for one half-marathon has become a challenge for Sinead while caring for a son with Pfeiffer Syndrome, her runner’s claim is no idle boast.
It is born of frustration from trying to access services for a child with a rare medical condition, but finding herself “constantly fighting the HSE to get help”.
Sinead is not giving up that fight anytime soon. And on top of battling for support services and coping with the challenges of Finn’s condition, the Co Cork mother has accepted another challenge — running the Dingle half-marathon to raise funds for the charity that offers her son support.
Up at 5.30am to train for the run before seven-year-old Finn, and his brother Tadhg, four, awake, Sinead is determined to raise money and awareness for the Bumbleance children’s ambulance service.
Bumbleance is part of the Saoirse Foundation founded by Co Kerry-based Tony and Mary Heffernan, whose children Saoirse and Liam died aged five from Batten Disease.
Like the Heffernans, who have become advocates for families of children with rare and genetic disorders, Sinead and her husband Gordon, of Baile Mhúirne, Co Cork, have faced difficulties in accessing information and appropriate supports due to the rarity of their child’s condition.
Pfeiffer Syndrome caused the bones in Finn’s head to be prematurely fused at birth and necessitated a series of major operations, including the removal and remodelling of his skull-cap to allow room for his brain to grow.
Breathing problems, septicaemia, and bacterial meningitis all took their toll, Sinead says: “Because of this, Finn is behind developmentally. He is non-verbal but understands everything around him.
We’ve always had to fight to get the support he needs, as his syndrome is so rare. Finn has fallen through the cracks, with no one to fight for him as he doesn’t fall under any of the main illnesses in Ireland.
“This is where Bumbleance has stepped in to offer us support and help for Finn. We have been told that he has huge potential, only to get the right supports he needs.”
She told the : “We’ve been finding it very, very tough to get help from the HSE.
Finn has had a lot of operations and has been in and out of hospital. He’s nearly left us three times already. Touch wood his health is very good now.
“As he’s non-verbal he can get very frustrated, so he would have behavioural problems as well. What he needs are speech and language, occupational therapy, and a psychologist to put us on the right path as to what are the services he needs,” says Sinead.
She said Finn was provided with a number of speech and language therapy sessions while attending Cope facilities, but the couple are now left with little choice but to pay for treatment themselves.
“We’ve been paying ourselves for private therapy but that costs a fortune and we’re not loaded by any means,” said Sinead.
“It’s just constantly fighting the HSE to get help. I don’t know how many times I’ve been onto the HSE about it, but a couple of months ago I got onto Bumbleance and they said ‘yes, we’d love to advocate for Finn’.”
She described how Finn’s syndrome had affected even the simplest of everyday tasks for her family, living in a rural area without access to supports.
“You’re very much isolated. We find it very hard to get out of the house with him. It’s next-to-impossible. If I run out of milk I have to ring my sister or my dad, who is 85, and ask them ‘is there any chance you could go down the road for milk for me?’ People hear ‘non-verbal’ but they don’t realise what goes along with it.”
Sinead describes Finn as “a very happy little child, but if things don’t go his way he can’t verbalise it and that’s when the meltdowns start”.
With such constraints on her free time, thoughts of running a half-marathon had not been uppermost in Sinead’s mind until recent months. “I got a phonecall one evening to be told I owe my sister €60, and I’m thinking, why do I owe her money?
“Then she told me she’d actually put me in for the Dingle half-marathon, which was nice of her, like. I nearly collapsed when I heard it”, said Sinead, who along with her sisters Anne and Mary had run marathons some years ago.
www.idonate.ie/fundraiser/11371201_running-for-bumbleance.html
www.idonate.ie/fundraiser/11371201_running-for-bumbleance.html
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