Ronald McDonald House Charities provide free accommodation for families with seriously ill children staying in nearby hospitals and Irish mum Lisa Gaffney shares her experience
Tilly was born with a rare congenital birth defect known as Pierre Robin Sequence (PRS)
Irish mum Lisa Gaffney has opened up about her daughter Tilly, who was born with a rare congenital birth defect, known as Pierre Robin Sequence (PRS), saying that in her family’s toughest hour, Ronald McDonald House offered “light in the darkest times”.
Lisa, who gave birth to Tilly via emergency C-section four years ago, and her family spent 227 days in Ronald McDonald House in Crumlin, the first house to open back in 2004, while Tilly was undergoing treatment in Children’s Health Ireland (CHI) at Crumlin.
Ronald McDonald House Charities provide free accommodation for families with seriously ill children staying in nearby hospitals. The houses allow parents and siblings to remain close to their child’s hospital bed, providing fully equipped bedrooms, communal kitchens, playrooms, and laundry facilities.
Speaking about the help her family received from the charity, Lisa told Chic , “Their support is immeasurable, it’s light in the darkest times. It’s a friendly ear when you think no-one is listening, it’s a home from home. It’s just everything you need and more.
“We never thought we would be there but it can be anyone in the morning so we need to do what we can to keep it going.”
Lisa’s pregnancy with Tilly was uneventful but from the moment Tilly was born, doctors noticed that she was struggling to breathe.
“I had had 3D scans, private scans, public scans, there was nothing really unusual, but it’s only when she came out via emergency section that we realised she couldn’t breathe,” Lisa says.
“And that indicated that something was going on. She went to ICU and they got the breathing under control with an emergency tracheostomy so she could breathe and then within two weeks she was diagnosed (with PRS).
“So it was all about trying to get her stable to begin with because she was nearly gone on a couple of occasions. The diagnosis then came about a week or two into her being in ICU.
“Professor John Russell in Crumlin put her emergency tracheostomy in at about five days old. She was incubated and sedated before that and then operated on as soon as they could do it.”
Then, aged six months, Tilly was diagnosed with Stickler syndrome.
Unfortunately, there is no cure, but symptoms are managed effectively with early medical intervention.
Lisa adds, “It was a sequence of events in the womb that led to it (Pierre Robin Sequence) so what happened was Tilly’s head dipped down and her chin wasn’t fully formed and her tongue was pushed up to the roof of her mouth and that left her cleft wide open also.
“So that’s the reason behind why she couldn’t breathe so it was nearly sort of mechanical as opposed to a syndrome itself. There is Pierre Robin Syndrome itself but Tilly has this type.
“Then 50 per cent of children who get this, then get Stickler syndrome and she does have Stickler syndrome – that was genetically tested in Germany. We found that out at six months old.”
Stickler syndrome is group of hereditary conditions that affect connective tissues, primarily collagen. Stickler syndrome is characterised by vision loss (severe nearsightedness), hearing impairment, joint pain or arthritis, and distinct facial features such as a small jaw or cleft palate.
Since then, Tilly, who is now four-years-old, has underwent “seven or eight surgeries” – a terrifying time for her and her family.
But Lisa adds, “It’s amazing how things come into perspective. You just go, ‘it’s this or nothing’ so you do it.
“But the surgeries did get harder – she’s had seven or eight surgeries now – and they got harder as she got older because she recognised what was coming and she’d be telling you, ‘I’m scared’ and ‘I see the dark’ which was the general anaesthetic so that was harder because she knows what’s coming but you still have to put her into theatre and every surgery is still a risk.”
Now, though, Tilly is thriving as she gears up to start primary school this September.
“Thankfully we’re this side of it now.,” Lisa says.
“Tilly is living life to the fullest. Any surgeries that will come in the future as a result of her Stickler’s will be planned. They won’t be of the life-or-death scenario that the others were so we’re in a really good place at the minute.
“She’s in pre-school at the minute and enrolled in primary school for September. So she’s getting ready for big school – and mainstream as well – and she’s eating, walking, talking, all of which she couldn’t do for years.”
The surgery Tilly underwent at Crumlin Hospital was “groundbreaking” as doctors built her a new airway from her rib cartilage. As a result she will be in the care of medical professionals until she’s 16 years of age.
“She will be under the care of Crumlin or the new hospital until she’s 16, that’s what we know so far,” Lisa says.
“She had the groundbreaking reconstructive surgery for the cannulation – then she didn’t cannulate naturally with the tracheostomy, her whole airway collapsed when she went to do it.
“So what they did was they took cartilage from her rib and they built her upper airway like a scaffold and they put her into an induced coma for two weeks and then she had a new airway, that’s how she breathes. Modern medicine if used correctly is just so powerful.”
Lisa and her husband Sean, who live in Cavan, 75 miles from Crumlin Hospital, are also parents to nine-year-old son Harry, who was just five when Tilly was born.
As Tilly had to spend so much time in Crumlin Hospital in the early stages of her life, the family leaned on Ronald McDonald House as a way of staying together while Tilly underwent treatment.
Altogether, they spent 227 days at Ronald McDonald House.
“Harry was five when all this happened, he had just turned five,” Lisa says.
“That’s where the Ronald McDonald House was a major, major help. It was the difference between two traumatised children and a family torn apart.
“We were all able to be together and Harry was so happy any time he’d come up after training or school on a Friday.
“He’d come up with his dad and stay with me. He met other siblings who were in the same situation so he wasn’t alone in this as well and he just loved ‘Ronald McDonald Hotel’ as he called it – he got food, a nice room, people to play with, it was actually quite positive for him despite everything going on.”
Not long after Tilly was born, it was suggested to Lisa and husband Sean that they contact Ronald McDonald House for support.
Lisa says, “When you have a child that’s in ICU very sick and you need to be very close, it’s suggested to you in ICU (about Ronald McDonald House), so it was mentioned to us as it’s literally just across the car park.
“So I remember Sandra was at the reception and we put it to her if they had a room – because it’s so busy because it’s such a wonderful service – and she said ‘leave it with me’ and I think two or three days later we got a room which was amazing because obviously I had had a C-section so I couldn’t drive and Sean had to work and Harry was in school and trying to juggle between two counties and a busy motorway, it was such a life saver – such a relief to have a base, a clean shower, a clean bed, and not have to worry about the financial side.
“I was obviously expressing food for Tilly as well because she was tube fed for two years so there’s so many different things to think about, just on the practical side of things.
In total, the family spent 227 days in Ronald McDonald House.
“Tilly was born in the winter, in January, and I came home in the autumn,” Lisa says.
“Over the 227 days we did spend there, it was on separate occasions as Tilly was up and down for surgery and then for more surgery and reconstruction – and the saving grace of having that comfort, that’s a huge relief in every way.
“I think one time when we were there there were three other trachy families so they’re ‘lifers’ as we call them. And we all had to become trachy nurses – both parents had to train as there’s not enough round-the-clock care when you get home so we were all able to help each other so that was an extra support that we all got that we wouldn’t have gotten without Ronald McDonald House.
Now, the Wall family is helping raise awareness for Ronald McDonald House Charities Ireland through a new music campaign with singer and mum-of-two Pixie Lott.
The family were one of just four families from Ireland and the UK selected to record a new version of The Proclaimers’ 500 Miles in London – which has been renamed 79 Miles to highlight the distance many families travel to access specialist children’s care.
“Sean is on the guitar and I’m on the keyboard,” Lisa told Chic .
“We just play a bit of music at home for hobbies. But Sean was up in Crumlin for an appointment at the end of last year and he popped into Ronald McDonald for a cup of tea as we do every time we’re up, and they mentioned they needed a musical family from Ireland and Sean went, ‘yeh, sure’, but we didn’t really know what it entailed so we just said, ‘yeh, whatever you need’, because we always said we would give back where we can.
“We thought nothing more of it then, that was November/December time, and then we got an email in March telling us all about coming over to the studio in London and we would be the band for Pixie Lott.
“So that’s how we got involved,” Lisa adds.
“Then we met the other families over there and we just clicked and it made recording so much easier because we all just had this common focus.”
Tilly and son Harry joined their parents on the set of the music video, along with the three other families, and Lisa says they had a ball.
“All the collective children were on set – in fact one of the guitarists is one of the children who had brain surgery and re-taught himself guitar after.
“And Tilly loved meeting Pixie and Harry too, he’s a bit older now so he got it. But they loved meeting the other children and it was lovely for the children to be involved in it as well because it is about them ultimately.”
Pixie Lott wrote brand new lyrics to iconic 80s hit ‘I’m Gonna Be (500 Miles) to raise awareness of Ronald McDonald House’s vital work in Ireland and the UK.
Of the campaign, Pixie said, “As a singer, it’s so special to be given the blessing to reimagine such an iconic song; but as a parent, it’s the meaning behind I’m Gonna Be (‘79 Miles) that matters most. Being part of a campaign that raises awareness for this incredible charity – and performing alongside such wonderful people and musicians – has been an honour. Please join me in supporting McDonald’s, Ronald McDonald House UK and Ronald McDonald House Ireland to help more families stay close to their children when they need it most.”
I’m Gonna Be (79 Miles) is available now on streaming platforms including Spotify, with the music video live on YouTube. All proceeds from the track will go to Ronald McDonald House Ireland and UK. Visit www.mcdonalds.com/ie/en-ie/good-to-know/ronald-mcdonald-house-charities.html
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