'Our lives would be very different without Hope House': Family shares emotional story as 15-year-old Lily fronts charity's winter campaign
A family from Mid Wales has shared their emotional experiences of the help provided by Hope House as their daughter fronts the charity's winter campaign.
Lily Knowles is the face of this year’s Hope House Children’s Hospices’ winter campaign and she will feature on the front of more than 30,000 letters being posted through doors across the region.
Nothing could have prepared Lily's family for what was to come when she was born with a life-threatening condition.
But, thanks to Hope House, Lily and her family, from Newtown, have been able to get the care and support they need - and make magical memories along the way.
“Our lives would have looked very different without Hope House,” said Lily’s mum Vicky.
“They’ve been with us all the way through Lily’s life and without them things would have been much harder.
“We have been cared for through all the important milestones in our family – from me and her dad Chris getting married, to our family growing as Lily’s sisters Gracie, Emilie and Erin were born. We’ve been through some tough times too when there have been different illnesses and emergencies in the family.”
Lily is 15 and has been cared for by Hope House since she was two-years-old.
Vicky said: “She lives with a number of serious conditions including Pierre Robin Syndrome - a condition which means her undeveloped jaw squashes her airwaves and she needs tubes to help her breathe.
“In lots of cases babies only need that help to breathe for nine months, but Lily has needed it her whole life.
“Lily’s condition changed month by month as she got older and there has been one complication after the next - she has had so much thrown at her. She has never been able to hear, walk or speak, but she is strong and keeps smiling.
“Hope House has been in our lives ever since Lily was small and are now like family. Everyone at the hospice loves Lily and has really got to know her over the years.
“Lily loves being around people more than anything else and it’s great to know that there’s somewhere where Lily is so loved and has an amazing time, with lots of smiles, while getting all the care she needs.
“At first, I couldn’t leave Lily, and I used to always stay at the hospice too when she came in for respite.
“But I know the care they give her is second to none, and it didn’t take me long to totally trust the brilliant staff and be able to leave Lily and get the real benefits of respite care.
“That’s been so important over the years so we can recharge, rest and have experiences with our other girls, which sadly can be very difficult to do with Lily.
“We’ve all enjoyed the benefits of having Hope House in our lives. The girls have made some magical memories. Whether that’s activities and days out with other brothers and sisters of children at the hospice, enjoying all the special family events they put on at the hospice, or having a family swim together - including water fights!
“For many families these are everyday things, but not for families like us. Having Hope House means we get to have those precious moments."
There is one particularly special memory that everyone in the family remembers.
Vicky said: "The staff dressed up Lily’s room at Hope House in a Mexican theme when we were all away celebrating our 10-year anniversary in Mexico. Lily sadly wasn’t able to travel with us - but we were able to have a video call and a bit of a fiesta and party together which was so special. The girls remember it so well."
As Lily gets older, Vicky says the future becomes more uncertain, but she is comforted that Hope House will be here to help.
She said: “At some point the time will come when we need end-of-life care for Lily. It’s hard to think about, and she does get more poorly as she gets older.
“We know Hope House will be here for us. We know we will be cared for. But for now, we can make special memories with the help of the hospice.”
People can help families like Lily’s to live their best life by donating or entering the charity’s Christmas Raffle at hopehouse.org.uk/lily
