A courageous toddler from Co Tyrone who passed away last weekend “is, and always will be, so unconditionally loved and will be missed more than words can ever say,” her heartbroken parents have said.
Lila Dripps-Weir faced enormous challenges from birth after being diagnosed with a rare condition called Pyruvate Dehydrogenase Deficiency, a life-limiting neurometabolic disorder, reports The Mirror.
PDH is a rare inherited metabolic condition that prevents the body from properly converting food into energy, causing a toxic build-up of lactic acid and impairing cellular energy production, primarily resulting in severe neurological difficulties and developmental delays.
The disorder is extremely rare and is thought to affect fewer than one person in every million, reports The Mirror.
The condition left Lila severely hearing and visually impaired and with significant cognitive and mobility difficulties, while she also experienced epileptic seizures on a daily basis.
When she was born, Lila’s mother Hayley and father Robert, from Cookstown, were told by doctors that she had just weeks to live, reports The Mirror.
She spent four weeks on life support in hospital, and her parents said their goodbyes to her on three occasions during her first 12 weeks.
However, Lila demonstrated extraordinary courage and resilience, defying the prognosis her doctors had given, reports The Mirror.
Lila spent much of her early months in the care of the Northern Ireland Children’s Hospice, for which her family have previously raised thousands of pounds.
Speaking to Belfast Live in 2024, her parents recalled how a referral to the NI Children’s Hospice had made a profound difference, reports The Mirror.
“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,” reports The Mirror.
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, reports The Mirror.
“We put so much pressure on ourselves to learn how to look after her before coming home,” Hayley said, “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,” reports The Mirror.
Sadly, Hayley and Robert confirmed that Lila lost her battle with her illness at the weekend, aged two years and ten months.
“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,” Hayley said in a statement posted on social media, reports The Mirror.
“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, reports The Mirror.
“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.”
She added: “Sleep peacefully, our Lila bear,” reports The Mirror.
A death notice described Lila as the “much loved sister of Ethan, Cordell and Mila, adored granddaughter of Willie (Dripps), Jacqueline (McGimpsey) and Pauline and the late Tommy (Weir), dearest great-granddaughter of Thomas and Ann (McKinney) and also a cherished niece, great-niece and cousin.”
The family have asked that donations be made to the Northern Ireland Children’s Hospice in lieu of flowers, reports The Mirror.
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