Mum Hayley on why The Extra Mile Counts in campaign to bring children’s hospice care to Liverpool

Without Claire House Hospice, Holly Smallman would have lived her life in hospital – which was never what her family wanted.

“We wanted her to live at home with us with the best quality of life, and Claire House helped to make that happen,” says mum Hayley.

“They were by our side every step of the way, and without them we just wouldn’t have coped. Our little family would have broken down very early on.”

Born with a series of complex medical conditions Holly – and her family – was supported by the Wirral children’s hospice and spent days in their care. Now Hayley, 49, is supporting its campaign to create that same hospice care at its newer site in West Derby.

“Claire House Wirral was, and is, fantastic,” says Hayley who lives in Aintree. “But we need something like it on this side of the water; for families in the city, it is a long way to travel.

“I can remember driving through the tunnel in the early hours and wondering what I’d do and who I’d call if Holly stopped breathing in the middle.

“The journey was traumatic. It was scary, and every minute was filled with fear.

“We need to bring that same care home to Liverpool.”

Hayley has taken part in a radio ad with presenter Leanne Campbell to support Claire House’s Extra Mile Counts campaign to develop full hospice care in Liverpool for babies, children, and young adults.

Claire House in West Derby opened in January 2018 offering day care, complementary therapies, clinics, play and music sessions, and counselling.

But it now wants to develop it to give Liverpool families access to specialist nursing, end-of-life care and emotional support without having to travel long and exhausting journeys to Wirral – especially when those journeys can prove impossible for a child who is critically ill.

Hayley says:

“As soon as I walked into Claire House I was met with such love and I could breathe again, and I’d love other parents of children like Holly to have that comfort and security too.

“The development of Claire House Liverpool could open up a whole new world to them.”

Holly Smallman was born in 2001, and Hayley and husband Garry, 53, were ‘over the moon’.

“I was having a little girl – although her brother Josh, now 27, wasn’t quite as delighted because he wanted a ‘goalkeeper’ – and I had all these dreams of dressing her in pink and taking her to ballet classes.

“I didn’t realise that Holly would be born with such a rare condition that was going to determine that her life, and our life, was never going to be like everyone else’s.

“Instead of dance classes, we spent much of her life in hospital waiting rooms.”

Holly had a rare undiagnosed genetic condition which left her with cerebral palsy, lung disease, epilepsy, scoliosis and osteoporosis.  She needed support eating and drinking, relied on a vent for oxygen and was in a wheelchair. Holly needed palliative care from the moment she was born.

Doctors thought Holly would never see her first birthday, but thanks to the love and care from her family and Claire House, ‘who became family’, she had 18 ‘amazing’ years.

Hayley admits:

“When people first suggested a hospice my first thoughts were absolutely not. I had it in my head it was where people went to die, and that Holly would go to sleep soon after we went in.

“I was so scared.”

In truth, Claire House Children’s Hospice helped Hayley and her family – she and Garry also have a daughter Ruby, 18 – create a million and one happy memories – one of the last, ironically, at Claire House in West Derby.

“It was my hope that Holly would one day be able to stay there but, sadly, that wasn’t to be,” explains Hayley, who manages corporate partnerships for Woodlands Hospice in Fazakerley.

It did, however, give Hayley one of her most valued memories.

“Holly was the first child to go through the doors of Claire House in West Derby, so it holds a very special place in my heart.

“And it is where we shared our last, and most special, experience just before she went to sleep.

“Holly had been poorly and was in ICU, and Ruby was ill in hospital (she ended up having her tonsils out). It was one of those moments when you don’t know what to do. Life was crazy.

“We’d often go as a family to support groups and just before Mother’s Day 2020, Claire House did a mums and daughters together day, and me, Holly and Ruby left Alder Hey and went there.

“It as a wonderful time with the three of us and Holly made me a picture and gave me some daffodils. She passed away two days before Mother’s Day, and I still have that picture, and I had the flowers pressed.

“I hadn’t realised how significant that time would be but it has become one of the most cherished memories I have.  She would have been too ill to travel to Wirral, which is why it’s so important to have Claire House in West Derby – and to have full hospice care there.”

Hayley says:

“In Liverpool, we’re amazing at owning our city and being proud of everything we do, and I’d ask people to take ownership now and support The Extra Mile Counts campaign.

“Our children need this. We need this.  But we can’t do it alone.

“Donate and raise awareness, and you can feel pride at being part of this journey and knowing what a huge impact it will have on so many families in the city.

“I’m campaigning because I feel so fortunate that Holly chose me to be her mum, and because everything she taught me was invaluable. Now I want to use that to make the lives of other children like my beautiful girl better.”

Find out how you can support Claire House here.

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