Please Help Us Support Lily

We are raising money for our beautiful daughter Lily, who has a life-limiting illness and complex needs. Not all of the practical, day-to-day equipment Lily needs is provided, with your help we can make vital adaptations to our home and buy the equipment that will give her the best quality of life right now.

After many years of trying for a baby, suffering an ectopic pregnancy and a miscarriage at 3 months, we continued with IVF and were blessed with our much longed-for daughter, Lily. She was everything we dreamed of – a little sister for Grace, someone to take on family adventures, to swim in the sea, visit Disney, and share fun, love, and laughter with. Sadly, this is not the future we have been given.

Lily has POLG (Alpers’ Syndrome), a type of mitochondrial disease. It is life-limiting, and there is no cure.

Lily was born healthy and happy, despite some jaundice and a short hospital stay. She thrived – a bright, clever little girl who walked with her frame, started talking, and hit all her milestones. We had no reason to suspect she was unwell.

Everything changed just after her first birthday in December 2022. A chest and ear infection made her poorly, but she bounced back quickly. Then, 11 days after turning one, Lily suddenly lost her balance and developed unusual hand movements. We rushed her to A&E, where doctors suspected seizures. Despite treatment, the seizures wouldn’t stop.

Lily was transferred to Alder Hey Children’s Hospital, placed on a ventilator, and endured 6 days of relentless seizures in intensive care. After extensive testing, we received the devastating news that Lily had inherited two faulty POLG genes – one from each of us. This explained the seizures, mitochondrial depletion, and the heartbreaking loss of all the skills she had worked so hard to gain. Within just 6 months, her abilities were stolen away.

Now, Lily suffers from continuous seizures (EPC), relies on a gastric tube for all nutrition, hydration, and medication, and faces risks of further deterioration. It breaks our hearts to watch our daughter struggle daily, and it has changed everything for our family. Grace has lost the sister she dreamed of, and we live in constant fear of what lies ahead.

Despite all this, Lily continues to shine. We hold onto hope that new treatments may become available in the future. In the meantime, raising funds will allow us to make sure Lily has the very best life possible – with the right equipment, home adaptations, and opportunities to enjoy moments of joy and comfort.

From the bottom of our hearts, thank you for supporting us, for caring about Lily, and for helping us give her the love and quality of life she deserves.