HANNA CRABB is four years old, bubbly and with a steely will to live.
Sadly, she is also the perfect example of why extra resources need to be provided to groups like the Jack and Jill foundation.
The only daughter of Nethanya and Dave, the little girl has a form of Leigh Syndrome, a severe degenerative condition which eats away at her muscles.
She has regular seizures and often wakes in the middle of the night unable to breathe.
While most people take eating for granted, Hanna needs to be fed through a tube in her stomach as she is unable to swallow – a necessity which means she occasionally coughs up blood.
In April the brave young girl, from Midleton in Co Cork, will turn five. For most children and their families the date would give rise to celebrations.
For Hanna the day will be tinged with woe. After that date the vital home help and support they receive from the Jack and Jill foundation will be unavailable.
Due to a lack of state funding, any child aged between four and six is excluded from the independent group’s services.
Hanna’s story is just one of hundreds of similar stories echoed around the country.
“The morning for us starts at seven when we bring our oldest boy Jotham off to school,” Nethanya, a 28-year-old mother of three, said.
“Hanna’s awake at that point, so I need to sit her up in the bed with the peg feed, which is where there’s a tube in her tummy called a mic/key button straight to her stomach because she can’t swallow.
“That milk goes in for an hour, and you have to slow everything down because sometimes she vomits blood.
“We have to give her eight medicines in the morning, syringe them into the peg in her belly, and give her muscle stimulation because she’s very floppy due to the muscle problems.
“Then we have to wake her a couple of times in the night to clear her airwaves.”
The work that takes place every day to help Hanna, who doctors believed would not live to see her first birthday, is done lovingly by her parents.
But her mother Nethanya admits that without the support from the Jack and Jill foundation’s local workers – who help to ensure the four-year-old can receive the care she requires at home – looking after her daughter would be a near impossible task to achieve.
“I would be lost without the night nurse, it means I can just sleep at night. If I didn’t have them I don’t think I could function.
“So because of that it is quite worrying to know we won’t have that support in the future,” Nethanya said.
“I’m trying to get our heads around it, around what’s coming.
“I’m originally from Athlone and Dave’s from England, we don’t have the family near us to give support. One night a week where I can sleep and not have to worry about Hanna because the night nurse is there with us, that’s so important right now.
“Even little things like that, something like sleeping, they’re going to become big things. We don’t know what’s going to happen, we really don’t know what we’re going to do.”
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