Lila is a feisty 15-month-old girl from a lovely young family in Moneymore. Lila “always brings a smile” to those who meet her, despite facing many challenges since she was diagnosed with a rare, life-limiting neurometabolic disorder. Mum Hayley and Dad Robert were told to “say their goodbyes” to Lila, but can now tell their emotional story of how a referral to Hospice care made all the difference.
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“Lila is feisty”, says her Mum Hayley. “She is non-verbal, but knows how to tell you exactly what she wants, and she always brings a smile. We enjoy all the wee shouts, even the ones at three o’clock in the morning! And she’s allowed to shout! She has every right, she’s fought hard to be here.”
“She’s fun, she likes the mischief,” adds Dad Robert. “But the first few months were just chaos. With Lila, it’s 24/7, plus we’ve got our other kids and everyday life. Without the Hospice, I honestly don’t know how we would have coped.”
“When Lila was born, she brought her own little package of worries,” says Hayley. “Lila has a rare condition called Pyruvate Dehydrogenase Deficiency, a life-limiting neurometabolic disorder. It’s progressive, there’s no cure. She is severely hearing and visually impaired, with cognitive and mobility issues, so she’ll be wheelchair bound. She has epileptic seizures daily. She’s got breathing problems and feeding problems, so she’s tube-fed. She needs a shunt for the severe hydrocephalus. She was on life support for four weeks. We were told that that was it and to say goodbye. Then she started taking apnoeas, forgetting to breathe.”
“Lila had 37 apnoeas in the one night,” says Robert. “The doctors said ‘Lila’s going downhill with this’ and mentioned the Children’s Hospice as an option for us.”
“The word ‘hospice’ was quite daunting,” adds Hayley. “We didn’t really want to think about the idea. But some of the hospital nurses said they had done their placement there, or taken kids to it who didn’t want to leave. We started to think, well, maybe it isn’t that bad. When the apnoeas got really bad, that’s when we decided to go.”
“From birth, she was so sick, and the prognosis was weeks. We said goodbye to her three times in her first 12 weeks. I was in denial. I kept saying, ‘I’ll get her to one year.’ But we went to Hospice believing that we weren’t coming back out of it. Then she started to do really well in the Hospice, and she has just thrived in there.”
Robert adds: “Going to Hospice was the first time that it didn’t feel like pure chaos of panic and no sleep. It felt more like home, like a safe zone. It was more family-orientated, more comforting. We loved it from the moment we got in there. Lila was so ill prior to going to Hospice but within the first week, the apnoeas slowed down. Week two, it was great and she was doing so well. Hospice was also a massive help with one-to-one teaching. Although she is our daughter, Lila at that stage was more of a patient to us, you forget ‘This is our wee daughter’. And they helped us to remember that.”
“We put that much pressure on ourselves to learn how to look after her before coming home,” says Hayley, “that we took the respite aspect out of it. We had almost become hospitalised ourselves. The Hospice nurses were saying ‘Why don’t you just go shopping, or out for a walk’. So we got a really enjoyable two-hour break and we had our first date night in a very long time. Without Hospice we wouldn’t get a break at all.”
Hayley adds: “After the first Hospice visits, Lila was restless, looking to go back. She gets spoilt rotten there! It is very welcoming and doesn’t feel like a clinical hospital environment. Other than the Hospice, there’s no heated hydro pool near us, so the Hospice nurses take her swimming. She makes wee pictures in the art room that she sends home. She loves the soft play and the sensory room with all the lights. When Lila got her wheelchair, the nurses took her out into the garden. The rooms all have the views and garden access from their bedrooms, so you can go out on a nice day. Hospice is just amazing.”
Robert adds: “Everything was just so scary. We also had our eldest daughter Mila to look after and I have two sons, Ethan and Cordell as well. There was no happiness for any of us for months and months. And then all of a sudden, you’re introduced to Hospice, a helping hand in really hard times, and it just changes everything to have the family there all together for the first time. We can never thank those people enough for what they do. They honestly changed Lila’s and all our lives. Anything we ever get to do as a couple is thanks to Hospice. Now we think of Hospice as a second home, we associate it with so many good things.”
Hayley agrees: “We have happy memories there, of taking Lila for her first walk, around the grounds of the Hospice. Reading her first bedtime story and her first proper bath. Sitting with all the wee ones singing her songs and reading her stories.”
“Unfortunately, Lila’s condition is life-limiting. So eventually she’ll start to get worse. I suppose right now she has outlived the initial prognosis, and she’s stable, and she’s doing better than anybody ever thought she would. And we just enjoy every day. She has taught us what’s important in life, what really matters. So I just get up every day and be grateful that we’ve got today. And as long as she’s here, we’ll keep fighting because she’s a wee fighter.
“And Lila loves Hospice. She just perks right up once she goes in. We would be completely lost if we didn’t have the Hospice.”
To watch Lila's story- https://youtu.be/cKPliQS9n0Q
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