The life of a disabled boy, Alex, who died aged 14 is being commemorated in a short animation narrated by the actor Hugh Bonneville, known for his leading roles in Downton Abbey, Notting Hill, and Paddington.
Created to launch our 2025 winter fundraising appeal A Gift to Remember, the film celebrates the special relationship between Alex and his twin sister, Talitha, and is inspired by their shared love of frogs.
It also shines a light on the hidden financial hardship families face when a seriously ill child dies, with many having just weeks to resolve finances before carer and child benefits are stopped.
Speaking about his involvement, Hugh Bonneville said: “Finances are the last thing any family grieving the loss of a child should have to worry about. It was a pleasure for me to narrate this beautiful animation in memory of Alex, and I hope that many will donate to this vital appeal so that support is there for families who need it most this Christmas.”
The heartbreaking reality
Children with life-limiting conditions have highly complex care needs, often needing round-the-clock support. This care falls to their parents, with many having to give up full-time careers to care for their child. When combined with the higher costs of caring for a seriously ill child, many families experience significant financial strain.
Families can reach emotional and financial breaking point when their child dies. Carer and child disability benefits stop abruptly just eight weeks later. Some parents may lose their vehicle and even housing if it was linked to their child. And with the average funeral costing over £4,000, families face impossible decisions at the toughest time in their lives.”
Recalling the period after Alex’s death, Stephanie McConville, Alex’s mum, said: “Our days were so busy caring for Alex and then it all just stopped. We were in the lead-up to Christmas, but we were arranging a funeral.
“Thankfully, the Together for Short Lives Butterfly Fund 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.
Getting the Butterfly Fund lessened our worry and gave us one less thing to think about when we were emotionally all over the place. It was a huge relief – an absolute lifeline. When you’re going through grief, the last thing you want is financial worries on top of it all.
Stephanie McConville, Alex's mum
Together for Short Lives’ Butterfly Fund
Nick Carroll, Chief Executive of Together for Short Lives, said: “Families going through the toughest of times shouldn’t have to worry about how they’ll pay for their child’s funeral or the next food shop, but it’s a painful reality for many that have cared for a seriously ill child.
“Our Butterfly Fund exists to alleviate some of that initial pressure, giving families the space they need to simply grieve, or to remember their child in a special way. Last winter, applications to the fund soared by over 200%. To ensure we can meet demand this year, we’re asking people to give bereaved families a precious gift to remember, with a donation to our winter appeal.”