Tilly turned 20 months old this week.

Family raise almost €8k for charity

A family, whose infant daughter recently underwent ground-breaking surgery to rebuild her upper airway, have launched a fundraiser to “give back” to Ronald McDonald House, which they say became a “beacon of hope throughout the nightmare” of watching their child battle for survival.

Few names are quite so fitting as that given to little Tilly Wall, first delivered by emergency C-section three-and-a-half weeks prematurely at Cavan General Hospital on January 22, 2022, and “unable to breathe” due to a rare congenital defect known as 'Pierre Robin Sequence'.

Characterised by an underdeveloped jaw, tongue displacement, and obstruction of the upper airway, Tilly was immediately transferred to ICU at Crumlin's Children’s Hospital where, fighting for her life, she'd undergo an emergency tracheostomy and a seven-month stay in hospital.

Tilly has underwent six more theatre visits over the past year, and only recently has returned home to Mountnugent to be with her family full-time.

Tilly means ‘battle ready’ and, as her mum Lisa Marie Gaffney acknowledges, “talk about appropriate!”.

Throughout it all, Lisa and Tilly's dad Séan would avail of the supports offered to the parents of critically ill parents provided by Ronald McDonald House Charities Ireland.

Starting on Instagram, the fundraiser quickly moved to gofundme to cope with the level of donations being made.

"So we've raised around €8,000 in a week, which is phenomenal, especially in the current climate when everyone is struggling, but its' for a very special cause, an amazing charity,” says Lisa.

“It's paying it forward for another family like us who find themselves in this position. We had no clue. Our lives were changed overnight. If the Ronald McDonald hadn't been there, we would either have had to pull Harry out of schools or either one of us give up our jobs. It keeps families together.”

Tilly is now 20 months old and already “beginning to rule to roost”.

Lisa Marie detailed: "She's a fighter, she's going to be trouble. She lives up to her name. She's just unbelievable. She came out of a seven-hour full cleft surgery back in February and was home a day and a half later. The resilience she has shown has astounded everyone at Crumlin. Her most recent surgery, which was the biggest, involved putting her unconscious for two weeks.”

Tilly's upper airway collapsed in one of her theatre visits when doctors tried to remove her tracheostomy tube. With “no alternatives”, surgeons set about taking cartilage from little Tilly's rib-cage and built her an upper airway.

“Like a scaffold. She's the youngest they've ever done it to. They literally built her upper airway, and then she had to be put unconscious for a full week in ICU. Unfortunately her lung collapsed, and she got bocavirus and pneumonia and the sedation had to be increased for another week, which was horrendous.”

Tilly also had to be weaned off a “cocktail” of powerful pain medication. “So she's come through that, and we've been able to nurse her through that. So, when they were happy that it was safe for her to come home, because there is always a danger of it collapsing, they gave us the okay to leave with her. We were nervous and the airways team were nervous because there's no precedence for this, but so far so good.”

Tilly is home two weeks now. Her family remain “cautiously optimistic” and, the further times passes from date of operation, the more hope they have for the future.

To have all her family under one roof “again” is key for Lisa.

Tilly follows big brother Harry everywhere he goes. "They're inseparable, and he's great with her. And so we can also be parents and not nurses. For the past 20 months we were changing her dressings, giving her nebulisers, all the things that cause discomfort but are vital to her survival. So to go from being her medic to being her mother, that's the most important thing for me.”

The family recently enjoyed watching Harry play a football blitz. “It was a really nice day and it was amazing to think this is what it's like not to bring a whole entourage of machines and emergency kits. That's when I began to feel 'yes, we can actually do this'. We can do stuff like everybody else out there. It was like a cloud had lifted.”

Looking ahead Tilly will still need a lot of additional support services such as speech and language, OT, and she also has Stickler syndrome, which affects her eyes and hearing.

But as Lisa says: “These things are manageable... but we're determined to get her there.”

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