We could not begin to repay what Claire House has done for us ... even if we had a million pounds

We could not begin to repay what Claire House has done for us ... even if we had a million pounds

EVERY mum treasures the bits of handmade Christmas crafts brought home by their children. But Hayley Smallman particularly cherishes the glittery snowmen and cardboard trees which she has displayed on a special shelf in her Aintree home.

“They are my Christmas decorations made by Holly and I’m so very proud of them. But then I am very proud of Holly.

“All my kids are special but we have been blessed to have her. She has brought so much joy to our lives and I wouldn’t change her for the world.”

Like every family the Smallmans have spent the past few weeks busily preparing for Christmas.

But Hayley accepts they wouldn’t be where they are without Claire House.

“Without them we just couldn’t function. That’s why I want to shout from the rooftops how wonderful they are.

“I could not repay what they have done for me if I had a million pounds. And the more people realise what they do and help support them, the more families like ours can be helped.”

Yet Hayley readily admits that, until a few short years ago, she hadn’t even heard of Claire House.

When Holly was born in December seven years ago Hayley and her husband Gary, a French polisher by trade, already had one son Joshua, now 10, and were thrilled with the arrival of their little girl.

But at eight weeks old Holly had a series of respiratory arrests.

“She simply stopped breathing. It was sheer panic and a totally surreal situation,” remembers Hayley, 32.

Doctors at Alder Hey hospital initially considered meningitis and, while Holly remained in intensive care, performed a series of tests on her.

It was discovered she had a rare metabolic condition and had suffered severe brain damage.

“It was as if someone had taken my life and put it in a washing machine on spin. If your child is ill you can make them better but we couldn’t do that for Holly.

“At the end of three weeks in hospital the decision was made to turn off her life support machine,” says Hayley.

“All the family came in to say goodbye and then Gary and me and Holly were taken to a small room and simply waited for her to fall asleep.”

But then a miracle happened.

“She simply turned her head, opened her eyes and looked at me. That’s when I knew we had a fighter.”

But in the coming weeks and months Hayley admits there were times when it was difficult to adjust to what life might hold for them.

“You have all these aspirations and hopes for your kids; I’d had this little girl and imagined her doing ballet lessons and us going shopping together and now we were faced with a very different scenario.”

Doctors warned her parents that she may not live beyond her second birthday.

“We decided to bring her home. If we only had a short time with her we wanted it to be as a family.”

But under her parents’ devoted care Holly has just marked her seventh birthday.

She has complex medical needs including epilepsy, cerebral palsy and chronic lung disease. She is also blind and oxygen dependant and is fed through a tube in her stomach.

Hayley admits there have been ‘dark periods’ where they have seen their daughter back on life support.

“We never know what the next day will bring. But no parent gets a handbook and this is the way life is now. Is all the hard work worth it? Yes, 110%.

“Hayley is so strong and so brave; I’m full of admiration for her.

“She can’t say ‘mum’ to me but she tells me all I need to know with her eyes. She loves water and Dora The Explorer and she adores her cuddles. When Joshua and her baby sister Ruby lie next to her Holly’s eyes simply light up; the baby takes her hand, kisses it and says ‘baba’ and she loves it.”

Hayley is frank about the difficulties faced in looking after Holly, a 24-hour-a-day regime dominated by rounds of administering medicine and feeds, hospital appointments and monitoring her well-being.

One parent also stays by her side each night to keep her comfortable.

“It is hard and as a couple it can take its toll. We can’t do a lot of things other families take for granted, either, like go swimming together.

“But we’re a strong unit and wouldn’t change things for the world. And we have the wonderful Claire House.”

Initially fearful of the word ‘hospice’ Hayley and Gary first visited Claire House some years ago.

“In my mind even the word conjured up the idea of dying but we went and it was wonderful. There’s joy in the air, not sadness.”

Now Holly attends Claire House regularly, enjoying the hospice’s sensory and arts and crafts rooms or experiencing an aromatherapy massage. She has also stayed there to allow Gary and Hayley a break and to spend time with their other children.

“We simply couldn’t cope without them. They operate a hospice to home service too which I used the other day. I had so much to do, so much shopping to get and was quite stressed by it all.

“The staff came to the house, took care of Holly and when I came home had even put some decorations up; that’s the sort of people they are.”

She is passionate that the service they offer should not be a luxury for parents like her and Gary.

“We don’t know how long we have Holly for so we try to cherish every moment. Claire House helps us do that.”