Lily to help promote vital work of Hope House

A Newtown family is helping raise awareness and vital funds for Hope House Children’s Hospices this winter by sharing the story of 15-year-old Lily Knowles, who has been supported by the hospice for most of her life.

Lily, who lives with a number of life-threatening conditions including Pierre Robin Syndrome, will feature on more than 30,000 letters being posted through doors across the region as part of the hospice’s winter fundraising appeal.

Her mum Vicky says the support from Hope House has been life-changing.

“Our lives would have looked very different without Hope House,” she said. “They’ve been with us all the way through Lily’s life and without them things would have been much harder.”

Lily has needed tubes to help her breathe since birth and has never been able to hear, walk or speak. Despite this, her family describes her as strong and full of smiles.

Hope House began caring for Lily when she was just two. Over the years the hospice has supported the whole family during important milestones, from Vicky and dad Chris’s wedding to the arrival of Lily’s sisters Gracie, Emilie and Erin. They have also stepped in during emergencies and periods of ill health.

“At first I couldn’t leave Lily when staying at the hospice,” said Vicky. “But I know the care they give her is second to none. Being able to trust the staff meant we could get proper respite, recharge and spend time with the other girls - things that are very difficult to do with Lily’s needs.”

The family has made many special memories thanks to the hospice, including themed events, family swims and respite breaks. One moment in particular stands out.

“For our 10-year anniversary we were in Mexico but Lily wasn’t able to travel,” said Vicky. “The staff decorated her room in a Mexican theme and we had a video call - a little fiesta together. The girls still talk about it now.”

As Lily gets older, the family knows the future is uncertain, but they take comfort in Hope House continuing to be there for them.

“At some point the time will come when we need end-of-life care for Lily,” Vicky said. “It’s hard to think about, but we know Hope House will be here. For now, we’re making special memories with their help.”

Hope House cares for more than 750 families across Wales, Shropshire and Cheshire, supporting children with life-threatening conditions and those bereaved. It needs £10 million a year to run its services, most of which is funded by public donations.

People can support the appeal by donating or taking part in the Hope House Christmas Raffle, which features Lily’s story.

More information can be found at hopehouse.org.uk/lily.