Taking part in Claire Bear 3K is little Luke’s thank you to lifeline hospice, Claire House

He might not be able to walk it, but little Luke Tickle will still proudly lead his family on the Claire Bear 3K route around Birkenhead Park next month.

“And every turn of his chair wheels, and every step we take, is a thank you to Claire House Children’s Hospice and what they do for us,” says mum Diane.

“We wouldn’t be able cope without Claire House and the help they give, not just to Luke but to our whole family.

“This is our way of showing our support for them, and for raising money to help them carry on the incredible work they do, because they are our lifeline.”

Four-year-old Luke was born with Cornelia de Lange syndrome which causes a host of issues from reflux and heart problems to respiratory difficulties. He is also visually and hearing impaired, and severely developmentally delayed.

As well as needing 24-hour care, he has been in and out of hospital with chest infections, sepsis, and pneumonia.

“There have been several times when we have thought we wouldn’t be taking Luke home with us and it is hard, both physically and emotionally,” admits Diane, 32. “But just knowing Claire House is there for us when we need it makes all the difference.”

Diane and husband, Matthew, 33, a systems co-ordinator for a lab company, already had healthy sons Jacob, now 10, and Dylan, five, before Luke was born, so had no reason to suspect that a third child to complete their happy family wouldn’t be any different.

But early in Diane’s pregnancy, they found out something was wrong.

“We learned at the 12-week scan that Luke had a chromosome abnormality, but we didn’t know exactly what that would mean,” she explains. “At 16 weeks it was discovered he had a heart defect and he was measuring small for his gestation.”

A 37 weeks Luke was born by caesarean section at Arrowe Park Hospital and immediately taken to the neonatal unit: “We didn’t know that at first Luke was unresponsive with no heartbeat for a period of time,” says Diane, from Ellesmere Port.

“He was up and down in the first couple of weeks but we were still hopeful we’d be able to take him home soon. Then he got sepsis and pneumonia and we were warned he might not make it.”

After two surgeries and expert care at Alder Hey where he was transferred to, Luke was able to go home.

“Everything is very unknown with Luke still, and with such uncertainty it does make it very hard. With lots of infections and hospital admissions he certainly likes to give us a lot of frights.

“Knowing Claire House is there makes us able to cope.

“We were introduced to Claire House when Luke was only a couple of weeks old and at first we thought it was just for children who needed end of life care, but we have learned not just that it’s there for so many other things and so many other children like Luke with serious and complex illnesses and conditions, but that it’s also there for their families too.”

Diane and Matthew went to the baby group at the Wirral children’s hospice and Luke has spent time in respite care so that the couple can rest and recharge their batteries and spend quality time with their other two boys, who have also enjoyed sibling events there.

Jacob, especially, has been supported with counselling sessions as he adapts to having been an only child for five years to going to one of three, one of them with a serious health condition, and the residentials meeting other children who are in a similar situation.

“He does ask about Luke, and we try to be honest with our answers and Claire House helps him to understand,” says Diane, who also has to deal with her own illness of Crohn’s, a gut disease which also causes arthritis and osteoporosis.

“When Luke is there, he has the best time with activities, and he is cared for and is safe. He loves the hydrotherapy pool and watching the lights, and he can be cheeky – a side which is always on display when he’s there.

“There was a time when he pulled his oxygen tube out of his nose and threw it back into the hydrotherapy pool so one of the team had to jump back in to find it!

“This has now become the norm for us, and yet there are so many times when it can all feel too much,” admits Diane.

“That’s why we are so grateful to Claire House – it’s like our extended family and nothing is ever too much trouble.

“Not having to struggle or worry, and being able to speak to other parents, means everything; it means that we never feel alone.

“That’s why we are doing the Claire Bear 3K, so that everybody understands what Claire House does and how amazing everyone there is. 

“And to raise money so that it can give the help and support it gives us to others.”

Diane smiles: “It’s a family event because Claire House is there for all of us, not just Luke. And it’s giving something back because I don’t know where we would be without it.”

The Claire Bear 3K takes place in Birkenhead Park on Sunday, June 23, and people can run, walk, scoot, or wheel!  To support Diane and Claire House click here.

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