The toddler's grieving parents said the brave young girl 'was the strongest person we have ever met'
who tragically died last weekend "is, and always will be, so unconditionally loved and will be missed more than words can ever say," her devastated parents have said.
PDH is an uncommon inherited metabolic disorder that stops the body from effectively transforming food into energy. The condition causes a dangerous accumulation of lactic acid and disrupts cellular energy production, predominantly resulting in serious neurological problems and developmental delays. Feisty 'Little Star' Lila defying the odds after being diagnosed with rare and life-limiting disorder Lila was left profoundly hearing and visually impaired by the condition, with both cognitive and mobility difficulties, while also experiencing daily epileptic seizures.
, that their daughter had merely weeks left. She required four weeks on life-support in hospital, with her parents having to say goodbye to her on three occasions during her first 12 weeks.
Nevertheless, Lila demonstrated remarkable courage and determination to surpass the medical team's predictions. Much of Lila's early months were spent receiving care at the Northern Ireland Children's Hospice, for which her family have previously fundraised thousands of pounds.in 2024, Lila's parents recalled how a referral to the NI Children's Hospice proved to be a turning point for their family.
"She started taking apnoeas, forgetting to breathe. Lila had 37 apnoeas in one night. The doctors said 'Lila's going downhill with this' and mentioned the Children's Hospice as an option for us," Robert said. Hayley added: "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 for 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 there.
"Robert added: "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 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 so 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.
"In heartbreaking news, Hayley and Robert have confirmed that little Lila tragically lost her fight last weekend, aged just two years and 10 months. Taking to social media, Hayley released a deeply moving statement: "It is with broken hearts that we share the news that our beautiful daughter, Lila, passed away peacefully, Sunday 31st May 2026, surrounded by her loving family, siblings, and in the arms of her parents at the Northern Ireland Children's Hospice.
"Lila was the strongest person we have ever met. She defied all odds and was just incredible in every way.
"We are so unbelievably proud of her and so proud to be her parents. She fought with such courage, strength, and bravery every single day.
"Our hearts are completely broken, but we are so grateful for every precious moment we had with her. She is, and always will be, so unconditionally loved and will be missed more than words can ever say.
"A death notice described Lila as the "much loved sister of Ethan, Cordell and Mila, adored granddaughter of Willie , Jacqueline and Pauline and the late Tommy , dearest great-granddaughter of Thomas and Ann and also a cherished niece, great-niece and cousin".
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