Winter Appeal 2025: Alex – the boy who loved frogs

Alex was born with complex conditions that left him needing 24/7 care. Despite his challenges, Alex spread so much joy in his fourteen years – and is still fondly remembered by many for his love of frogs.

Here, Alex’s parents, Steph and Tony McConville, share his story and how Together for Short Lives’ Butterfly Fund helped them during their time of grief.

“Alex was such a diva! He brought so much joy and was loved by so many people.” – Steph and Tony, Alex’s parents

Music was a love of his and we always used to sing songs about frogs – he seemed to really love those, and frogs became something he absolutely adored.

Our whole house is covered in frog art, ornaments, and toys. His twin sister, Talitha, has carried on this obsession, and whenever we go anywhere, we collect a new frog memento as a nod to a trip that Alex could have been on with us.

Born fifteen weeks premature, twins Alex and Talitha went straight into neonatal care, where Alex stayed for six months. He wasn’t much older when he had to have a tracheostomy, which opened up his windpipe so he could breathe. Then another diagnosis came of cerebral palsy and dystonia, which meant his bones were weak and would easily fracture, causing him pain.

From that point, we both had to be trained up in how to look after him. How to administer his feeds by a nasal tube, clean the tubes, deliver his medicines, and keep him comfortable.

Our life was completely changed. As Alex grew, the house needed to be adapted for wheelchair access, hoists were installed, and we had a special mobility vehicle to go out and about. We both had to give up our careers to be his carers as his needs were very complex. But it was never a burden. We were Alex’s carers, but we were his parents first.

Despite Alex requiring 24/7 care and most of our attention, Talitha was never resentful. She’d always make sure he was included in whatever was going on. When he was unwell, she’d check in on him and hold his hand as they’d watch films. And now she has continued his love of frogs.

“We were in the lead-up to Christmas, but we were arranging a funeral.”

Throughout Alex’s life, we had many trips in and out of hospital, including one lengthy stay in hospital where it was decided Alex would require a ventilator. This meant more training for us about how to use the machinery which needed to be run day and night. Then there was the cost to keep it all running. But even with these big dips, Alex always bounced back. It became normal for us.

Then one day, not long after his fourteenth birthday, Alex was particularly unwell and we had to call an ambulance to take him to hospital. Once there, we were taken into a room and told it wasn’t good news. The consultant, who’d known Alex since he was a baby, told us that Alex was dying.

We’d prepared for this for years but in reality, you can’t prepare for that moment. And then it happened – he was gone.

The house was then quiet, that’s what we can remember. Our days were so busy caring for Alex and it all just stopped. We were in the lead-up to Christmas, but we were arranging a funeral.

Thankfully, through our Acorns Children’s Hospice family team worker, we found out about the Together for Short Lives Butterfly Fund. They gifted us £300 which we could use however we needed. It might sound mundane to you, but we put it towards car insurance. As full-time carers we had a mobility vehicle for Alex which we had to send back two weeks after he passed. We were fortunate to have some savings to help buy another car but the cost of the insurance was shocking.

Watch the story

Help us support more families this winter

Over winter last year, applications to our Butterfly Fund soared by more than 200% and we struggled to meet the demand. We’re worried that the same will happen this winter.

By donating to our appeal today, you could help more families like the McConvilles during their hardest times.