“Thanks to Claire House, Faye’s just so happy and we get to see her smiling and laughing.”
Mum Joanne explains how Claire House always brings a smile to daughter Faye’s face, while providing much-needed support for the whole family.
“Seeing my smiley girl Faye giggling away at Claire House Children’s Hospice, I know just how much she loves her time there.
“But as the young mum whose baby wasn’t smiling or meeting her milestones at her six-week-check, I never would have pictured these happy moments.
“I was only 20 when I had Faye and, while everything had seemed fine during my pregnancy, she was born with a rash all over her body, a low birth weight and a small head.
“Initially, the doctors thought she had an infection, so she was given antibiotics in the special care baby unit and later sent home.
“When we went for her check at the Liverpool Women’s Hospital, the consultant confirmed she wasn’t fixing and following, smiling or doing any of the things she should have been at six-weeks-old.
“An MRI scan confirmed she had brain damage due to a worrying infection and there was no cure for it. I was devastated.
“They diagnosed it as Cytomegalovirus, a common virus that can cause serious problems during pregnancy, which I may have unknowingly contracted while working in a nursery.
“The doctor said what happened to Faye was the same chances as winning the lottery. And I just remember thinking, it’s not a great lottery to win is it?
“Heartbreakingly, we could have lost Faye before she was born – it was a lot to take in as a first-time mum. She’s severely disabled with cerebral palsy, she was born deaf, and her vision is impaired.
“I couldn’t imagine my life without Faye, and we love her to bits, but every day is hard.
“That’s where Claire House plays a massive part in our lives. It lets me completely switch off and take a breath. They’re like real-life angels.
“Faye is completely dependent on people 24/7 for every aspect of her care. For me, it’s doing the same thing over and over and, with the lack of sleep, it’s been like caring for a newborn for 19 years.
“Having a disabled child took its toll on my relationship with Faye’s dad and we separated when she was two.
“I was a single mum until I got with my partner Jay when Faye was five and we have our daughter Amie, now 11.
“Faye’s dad plays a part in Faye’s life, and my partner is great too, but I can’t just ask friends to watch Faye because she has epilepsy and complex health needs so they can’t look after her.
“When Faye comes to Claire House, it’s like a big weight has lifted. I know she’s going to be looked after and I don’t have to worry if she’s having her medicines on time.
“Faye absolutely loves it. She gets to spend time with other people, which is exactly what she should be doing as a young adult.
“She knows when we pull up at Claire House and she has the biggest smile on her face.
“There’s so much for Faye to enjoy. She loves the hydrotherapy pool, music therapy, arts and crafts, movie nights, and being pushed in the wheelchair.
“She comes home with lovely photos, and you can see how happy she is there by the big smile on her face.
“As a family, we’ve made memories together at the Everton Football Club visit and Christmas parties.
“I honestly don’t know what I’d do without Claire House. It gives us that freedom to do things, like having mum and daughter time with my younger daughter and taking her to Disneyland.
“We take Faye on holiday too, but it’s not a break because I’m still looking after all her care needs and it’s stressful getting on the plane.
“I worry about Faye, so it’s reassuring knowing there are other people like us at Claire House and we’ve had that support for the past five years.
“For Amie, it’s normal life. She’s like the bigger sister that Faye should have been. She doesn’t know any different, but it can be odd when she sees people staring at Faye when we’re out.
“So, Amie really enjoys the sibling events, even going away for a couple of nights, and she’s made friends.
“Obviously, when Faye was diagnosed, it was a very sad time. She never met her baby milestones like rolling, taking her first steps or talking, and I was always waiting for it to happen, although I knew it wasn’t going to.
“But, thanks to Claire House, she’s just so happy and we get to see her smiling and laughing.”