Hard Times 'Lockdown is difficult as it is but when you are doing it with a child with special needs it makes it much more difficult'
Jack & Jill charity asks for help as lockdown hits fundraising bid
A young couple is backing a drive to support a children's charity that has been severely impacted by the effects of Covid-19.
The Jack & Jill Children's Foundation, which provides care and nursing supports for the families of hundreds of ill children, has struggled to maintain funding levels since the pandemic hit. This year alone, they have already seen a funding gap of over €200,000 in cash raised.
Now the charity faces the curtailment of one of its biggest annual fundraisers. Due to restrictions there are no national 'Up the Hill for Jack & Jill' walks being organised this October. Instead, participants are being asked to keep their hill walks small, safe and local.
Among those heading for the hills this week are Clare and Martin McElhinney, who say the charity has "transformed" their lives. Their little girl, Einín was born with Kabuki syndrome, a rare condition which causes developmental delay and other medical issues.
Einín requires round-the-clock care and until the charity came into their lives, the family struggled to cope.
As a precaution, the family suspended nursing hours in their home during the spring lockdown - which only served as a reminder of how precious the nursing supports are to them.
"Lockdown is difficult as it is but when you're doing it with a child with special needs it makes it much more difficult," said Clare.
"I absolutely missed the hours during lockdown and it was really trying because she's so active and needs to be moving all the time. She's fed through a tube and has to be fed every three hours, including during the night, to keep her blood sugar levels stable. We struggled because there was no help.
"When the restrictions eased and the nurses came back, it was such a relief to be able to get out. It was a great feeling. Last week when the nurses came we went hillwalking and this week we're going to do our Up the Hill."
The four year old, who lives with parents and half sister Eve in Ballyfermot in Dublin, was born with Kabuki syndrome and her parents had no idea anything was wrong before she arrived into the world.
"She has developmental delay. It's a multi-syndrome disorder," explained Clare. "One of her biggest issues is hyper insulinism. It means that her pancreas oversecretes insulin. It's basically the opposite of diabetes.
"When she was born it was discovered she had dangerously low blood sugar levels and other issues. She was straight off to ICU. We had no idea anything was wrong before that. We went into survival mode trying to get through. She spent her first nine weeks in hospital. She also had respiratory and cardiac problems which have largely been resolved."
The family attended a conference on hyper insulinism and this was when a doctor first asked if Einín had Kabuki syndrome. She was tested for the condition on her return to Ireland and tested positive.
"It was a shock to hear it, even though in my heart I knew," said Clare. "Your child grows up and you want them to be independent. I had experienced this before because my twin sister Jane had a severe head injury as a child and requires full-time care. I wanted as much independence for Einín as possible.
"It was the unknown that was the most difficult. We didn't know much about it or whether there were support groups. I reached out to other families who have become friends. We go to England to meet other families once a year.
"Talking to other parents helped definitely. It's good to know of other families' experiences."
Claire said she did not know she could avail of nursing support hours until she was put in contact with Jack & Jill. From the first time one of the nursing managers called to meet them, she said she felt a huge sense of relief.
"I just felt like I was closer to getting a bit of normality back, that Marty and I could go to the cinema or have a break without a worry. The nurses become like an extension of your family. You have no issue with trusting them with your child because they are wonderful, so supportive and empathetic. They were like a breath of fresh air, they give you confidence as well. Having the break gives you time to reflect and self care. You can begin to crumble, but you regenerate.
"It's so beneficial, not just for us but for Einín, she gets to see her mother relaxed. And it's good for her to have other people in her life. They love her like she's one of their own and she loves the attention she gets off them."
Proud mum Clare said that despite the issues Einín has, she's grown into an active and funny four year old.
"She loves kicking a ball, she'll play ball games all day long. She has an infectious smile, she's affectionate. She has really beautiful long hair.
"She loves magazines and expects one every time we go to the shop! And she loves music. Her dad's a drummer and she takes after him - she likes a good heavy beat."
The Irish charity has been resourceful in keeping its funding going to support families like the McElhinneys.
"As a charity, we need a big push up our fundraising hill in 2020 and beyond," said CEO Carmel Doyle. "Our families rely on our support now more than ever."
For more information on the work of the Jack and Jill Children's Foundation and its fundraising visit jackandjill.ie.