“We would be lost without Claire House.”
Fourteen-year-old Charlie suffers from a series of complex medical conditions. With no other support, his family have been fortunate to have Claire House to rely on.
“We had no idea Charlie had any complex health problems when he was born,” shares mum Shirley from Anfield, Liverpool.
“For the first four months, he was developing normally, he was lifting his head up and doing everything you would expect.
“Then he had his first seizure.”
After initially being told that it was just a fever, the hospital diagnosed Charlie with a rare brain disorder called Lissencephaly that affects his feeding and swallowing. “He can’t walk or talk or sit up,” says Shirley.
“After his diagnosis, Charlie continued to have seizures and the development we had seen in him just stopped.”
Charlie requires 24-hour round-the-clock care and when he was five years old, the family were referred to Claire House.
“Charlie is a lovely boy, he has such a big personality,” Shirley says.
“He enjoys lights and music and especially loves being around people.
“But it can be a lot.
“You never get a middle with Charlie. He can be happy, chilled and sleepy or he can be very unsettled. On those days, he is loud and can cry for quite some time.”
Shirley and Charlie’s dad Lee rely on support from Claire House.
“Charlie’s grandparents have always been hands-on and used to sometimes have him overnight.
“But they are in their 70’s and he would just be too much for them to have now.”
Claire House have been there for the family in those moments when it becomes too hard.
“We can go night after night where he just will not sleep. It can be so exhausting,” Shirley explains.
“There have been nights where I have sat on the end of the bed and just cried because I don’t know why he won’t sleep or why he is in pain.
“I have then emailed Claire House in the early hours because we need their support.
“We don’t always expect them to help, because we know there are more families who need them, but they will always try to accommodate us where they can.
Charlie goes to Claire House for both planned and emergency respite stays.
“We would be lost without Claire House,” says Shirley.
“There is no-one else I would trust to look after Charlie.
“When he comes to Claire House, we know that Charlie is well looked after and he loves being involved in all the activities at the hospice.
“At Claire House, every day is different for Charlie.
“He can go for days out that we would struggle to do, he can be part of a musical session or do crafts in the art room. All Charlie wants is to be included in whatever is happening at the hospice.
“The team at Claire House are like family. We can talk about anything and they are amazing with Charlie.”
For Shirley and Lee, respite stays offer a much-needed break.
“When Charlie is at Claire House, we can recharge our batteries and finally sleep.
“We can do the things we don’t often get to do. Lee and I can go out for dinner with Charlie’s sister Beth or go out just the two of us, which doesn’t happen often.
“The hardest thing during this time is deciding whether to go out every day or sleep in.”
In the eight years they have been supported, Claire House has been able to offer Charlie and his family additional support at the crucial times they need it.
“If it wasn’t for Claire House, I don’t know where we would be,” says Shirley.
“Charlie’s condition means he suffers a lot with chest infections which has led to a lot of hospital stays.
“When he has been discharged, Claire House has really helped with step down care to make sure that transition back home is easier.
“Whenever he has been in hospital for a few weeks, they are always there to help afterwards.”
Claire House has also helped the family to make special memories. From
“We have been so fortunate to have a number of treasured memories because of Claire House,” says Shirley.
“But for me, the one that always comes back to me is when Claire House arranged for us to switch on the Christmas lights at Cheshire Oaks.
“During the whole experience, we were made to feel like celebrities and Charlie was the superstar.
“He loves lights and to be able to switch those lights on, it was truly special and something that will stay with me forever.”