“Claire House means the world to us as a family. We would be absolutely lost without them.”
For four-year-old Isla and her family, Claire House Children’s Hospice has become their safe haven at Christmas and all through the year. Here Isla’s mum, Fiona, and nan, Joanne, share how the local children’s hospice has helped their family create special memories.
“Isla is my angel girl,” shares Fiona.
“She is the most content, happiest, gorgeous little girl.
“But she faces a lot of struggles.”
Isla was born with a rare genetic disorder, CDKL5 Deficiency Disorder, that results in seizures, which are difficult to control.
“Isla can’t tell you that she loves you. She can’t give you a hug but when she looks at you, you get that hug, you get that validation from her.
“To be around Isla, you would never think she’s been through what she has. She is just the strongest, bravest, happiest little girl,” says Fiona.
Isla was referred to Claire House three years ago and since then, the children’s hospice has been there to support the whole family.
Isla’s nan Joanne, who has come with the family to Claire House, shares: “When Fiona was introduced to Claire House, she thought it was simply for the end of life.
“But then we came to visit the hospice, I was so proud of them for seeing how much Claire House could offer.
“It was a relief for me, to know Claire House was going to be there for them throughout Isla’s life.”
Every year, Christmas is a special time for Isla and her family. But not every Christmas has been easy for the family.
“Last year, Isla was in hospital for nearly the whole of December,” says Fiona.
“I was worried she was also going to have to spend Christmas in the hospital.
“But Claire House was there for us and they came onto the ward to support us.
“They focused on us being able to make memories despite us being in the hospital.
“We got to make Christmas art, using Isla’s feet to make Christmas trees.
“Both Isla and her sisters loved it.
“Some of Isla’s best memories have been made at Claire House at Christmas time.
“Claire House are just wonderful. They always make sure that Isla and us as a family have an extra special Christmas.
“Claire House have given Isla a better chance at life, at being able to enjoy her life.”
Not only has the hospice supported the family in hospital, but they also provide overnight respite stays for Isla and sibling support for her older sister Gracie and twin sister Freya.
“I remember the first stay that Isla was staying, I felt so anxious,” said Fiona.
“It can feel daunting leaving your child for the first time, but Claire House were great.
“We had been to sibling days and sessions so I was able to build up friendships and trust with the staff at Claire House.
“While Isla was having a great time at the hospice, I could have some focused time with her sisters. It truly meant so much to me.”
For nan Joanne, it is an added relief to have seen how happy Isla is at Claire House and knowing the difference it is making to her son, Isla’s dad, and Fiona.
“It truly helps just taking that little bit of pressure off.
“We know that when Isla is staying at Claire House, she is safe, loved and content.
“Although Isla is non-verbal, each time I have gone with them, she just gets excited and will move her arms and legs.
“I truly believe she knows her surroundings there and is just happy,” says Joanne.
Fiona continues: “Whether she is playing in the garden, doing arts and crafts or having some time in the hydrotherapy pool, Isla just loves being at Claire House.”
“And for me, that is everything.”
Money donated to Claire House this Christmas will ensure it can give families a magical time and help other families who need support in the future.