Circle K teams up with the Jack and Jill Children’s Foundation to ease the road ahead for Irish families

Circle K reveals how its new two year partnership with the Jack and Jill Children’s Foundation – and the money raised by stores and customers – will impact under-pressure Irish families.

When Lucy Thompson was born in October 2018, all seemed well at first, as her mum Carla explains.

“A doctor came round to see her and she thought she was a little bit floppy, but he checked her the next day and thought she was ok to be discharged, but we could go back and see a paediatrician when she was four months old,” the Mullingar mum says.

But over the months, little things cropped up with Lucy that gave her parents, Carla and Chris, a few concerns – some impaired hearing, failing to meet milestones such as rolling. However they didn’t realise something much bigger underpinned these conditions.

Genetic testing

“She didn’t sit up until she was nine months old – things like that. We went back to the paediatrician when she was 10 months old and I brought this all up that she wasn’t doing this and she wasn’t doing that and she said we’ll send her for genetic testing,” Carla says.

“And when she was 11 months old she was diagnosed with Zellweger syndrome, which is a rare genetic disorder and a life limiting condition.

“Both myself and Chris are carriers so we passed it down to Lucy. There was a 25% chance that she would get it. Only one in 50K people are diagnosed with it – it’s very rare and it’s a metabolic condition that would affect the brain, the liver and the kidneys.

“It was a bit of a shock to us because a lot of kids would have facial abnormalities and different things. She was eating well and doing everything well, only she wasn’t moving as much as a child would be at that age.”

Rare condition

Around 14 months, Lucy was starting to bum-shuffle and play, Carla says.

“She was saying Hiya and she would wave and point at her nose and do little bits that any child would. Then she broke her leg last May and since then, because she was stuck in the one position for three weeks, she completely regressed from then and she never moved after that.

“She can’t sit up any more and she has no neck control so it’s constant lifting and carrying her around. She started to get these muscle spasms then around November and she wasn’t sleeping at night and was in an awful lot of pain. She’s really only settled in the last three weeks and is back to sleeping through the night.”

Since Lucy’s diagnosis, Carla has become her full-time carer. Her husband Chris works in construction and the couple are now expecting their second child.

Specialist support

But their lives have been changed by a suggestion by a hospital outreach nurse that they get in touch with the Jack & Jill Children’s Foundation, an Irish charity that funds and delivers specialist home nursing, respite support and end-of-life care for children from birth to six years of age who have complex and life-limiting medical conditions.

“With lockdown and everything, Lucy was so used to just seeing me, so I was nearly reluctant to have anyone here,” Carla admits.

“But Jack and Jill have been so good, coming in and doing nursing hours. We get 48 to 60 hours a month and it’s been just great to have that respite, for them to come in and for me even to go and do the shopping, or get out for a walk to clear your head, even for your own mental health.

“It takes the pressure off and you forget – you have your own little time and you forget the busyness of it all, until you come back.”

Key foundation

The Jack & Jill Children’s Foundation was launched in 1997 by Jonathan Irwin and his wife Mary Ann O’Brien, the founder of Lily O’Brien’s chocolates, in memory of their son Jack who suffered a brain trauma shortly after birth that left him developmentally delayed.

The couple brought their baby home and put together their own homecare plan with the help of five local nurses from their neighbourhood, allowing their beloved Jack to live at home for 22 months until his death in December 1997.

Jack & Jill Children’s Foundation CEO Carmel Doyle says that became the blueprint for the charity – finding a specialist nurse who can come into the family home, talk to mum and dad, and deliver practical help and specialist knowledge that allows the family to do the normal things that the rest of us take for granted.

“The kind of children that Jack & Jill look after are children with severe to profound neurodevelopmental delay. They might be children with a brain injury as Jack had, or a genetic diagnosis or cerebral palsy,” she says.

Better at home

“These wonderful children come with a lot of challenges, so they may be tube fed, oxygen dependent, take a lot of seizures and have a lot of medication, but underneath all of that unknown for the parents, what we do know is that they do better at home where their parents want them, with a bit of help from Jack & Jill.

“We usually get a referral through the maternity unit and our nurse would go and meet the family and we will assess the situation and once the child meets our criteria, we’ll have a nurse there within 72 hours to help out and to give the parent carers a break.

“These parents are in charge of their child’s care plan but they need a bit of help, they need to be able to catch up on sleep, and if they have a Jack & Jill nurse who can come in and give them a break it’s amazing what they can do.

Supporting families

“Today we look after 400 children right around the country and we will fund and provide nursing for up to 80 hours per family. It’s not a weekend of respite or one week of respite – when a child comes to us and meets our criteria, that connection is going to be there for up to six years so that’s a big responsibility for us.

“It’s fast, it’s flexible and it’s delivered by a wonderful group of specialist nurses in Jack & Jill who are the case managers and who make this happen.”

Circle K have been involved with the Jack & Jill Children’s Foundation since their Topaz days, but their newest partnership, launched on International Nurses Day, will see them undertake a major fundraising initiative called ‘miles for Jack and Jill’.

Sense of community

“I think the key thing about Circle K and Jack & Jill is all about community – we’re at the heart of the Irish community. and that’s why we match so well,” Carmel says.

“We’re so lucky to be a partner for Circle K. We think this partnership is really going to keep Jack & Jill sustainable and it’s going to fuel our service into the future.

“If you look at Circle K they’re all about families and making life a bit easier as you pop in and fuel your car and you get your few bits and pieces  so they look after people. We’re trying to do the same thing in terms of making life a bit easier for our families.

“The Circle K involvement actually allows us to sustain and expand the service, because recently we’ve expanded to the age of 6. We were at 5 up until last year, so we’ve expanded to the age of 6 and we’ve now increased the maximum hours that we will allocate per family to 80 – we couldn’t do all that without the care capital behind us, without raising the money.

Fuelling essential services

“So Circle K through their new campaign are going to raise a lot of money for Jack & Jill and they are also raising awareness because they’ve got a great advertising campaign going and also the branding in store as well and the app.

“You as a customer may be fuelling up your car but you’re also fuelling an essential service through Circle K who are providing us with the money to keep us on the road.”

Judy Glover, senior marketing director with Circle K, says the company has chosen to partner with Jack & Jill because Circle K is the largest fuel and convenience retailer, operating in every community in Ireland.

“Part of our brand is that we are fully committed to making a difference in these communities, so we need to align ourselves to partners that allow us to operate in the community,” she says.

Landmark year

“The Jack & Jill Community Foundation are celebrating their 25th anniversary this year and they operate in the community, so this partnership is a nice fit for us.

“That money translates directly into nursing hours and there are 400 families in Ireland who rely on this support. It provides that gift of time back to the families. We feel that it’s so tangible for our customers to feel that they are making a difference.”

July says Circle K is aiming to raise at least €270,000 raised in much-needed funds for the charity, the equivalent of 15,000 hours of Jack and Jill’s in-home nursing care and respite support.

miles for Jack and Jill

“We are undertaking multiple initiatives in order to fulfil that commitment. The first thing we did was create ‘miles for Jack and Jill’ – this is a campaign running up until the end of July, running in our sites across the Republic, both company-owned stores and the Circle K express network.

“It’s hosted on our loyalty platform, so you can download the loyalty app CK or you can access it through the Play or Park loyalty game.

“So every time you make a purchase in-store, you scan the app or tag, and digital coins are created in the background which go back into a pot and go back into fuel for the nurses.

“It’s just the first of many initiatives and we’re aiming to generate €45,000 of fuel for these nurses between now and July.

“But we will be launching many more initiatives that the community and our stores can share in together.”

Godsend to families

Carla says the two Jack & Jill nurses, Deirdre and Liz, who care for Lucy with the help of Circle K’s support, have been a godsend to the family.

“Once they’re there, they can come in and feed Lucy or play with her and you just feel so safe with them, because you trust them and they just know here now, inside and out,” she says.

“She loves them and she knows them now – they’re like anyone in the family now. I’m due to give birth in August and they’re willing to come in and help out as much as they can, so it will be great to have them and I won’t have to worry.

“I just feel like they come in and take your mind off everything – no matter how intense your day can be, they just come in and uplift you. If you need any support, they’re just at the end of the phone – they’re always there to support you.

“It’s great that Circle K and Jack & Jill are coming together for this new campaign. They’re such a lovely bunch of people and it’s great to see the two come together for such a good cause.”

To read the full feature, visit Ireland’s Forecourt & Convenience Retailer HERE.