“I don’t know how we would have coped without Claire House.”
Each day with Luke is different and for his mum Diane, it can lead to uncertainty. Here, she explains how Claire House is a lifeline and why you should enter the charity’s Claire Bear 3k.
“At Luke’s 12 week scan we found out that he had a chromosome abnormality,” says Diane.
“Throughout the pregnancy, we weren’t entirely sure how Luke would be and we kept having scans.
“They identified that he had a heart defect at 16-weeks pregnant which is when we also found out he was measuring small for his gestation and advised us to have a planned c-section.”
Luke was born at 37 weeks and was taken straight to the neonatal unit.
“We didn’t know at the time Luke was born as he was unresponsive with no heartbeat for a period of time.”
Tests showed Luke had Cornelia de Lange syndrome. He is also visually and hearing impaired and relies on oxygen.
“Luke was very up and down in those first couple of weeks in neonatal, but I was still hopeful we would be home soon,” shares Diane.
“Then he got sepsis and pneumonia. It was at this point, we were introduced to Claire House.
“At the time, his dad and I were naïve and thought the hospice only did end-of-life care.
“Fortunately, on the day the referral to Claire House went in, one of the nurses introduced herself at the hospital and things took off from there.”
After a couple of surgeries, Luke was eventually discharged from hospital the day the COVID lockdowns started. While the family were able to enjoy quality time to get her, it was hard for Diane, her husband Matthew and Luke’s older brothers, Jacob and Dylan.
“Luke’s eldest brother Jacob really struggled. He went from being an only child for nearly five years to having two little brothers in 18 months and one with complex needs.”
As soon as the COVID restrictions were lifted, Diane and Matthew were able to attend the baby group at Claire House.
“For us, it was incredible to meet and speak to other parents who know the difference Claire House makes.
“It was just what we needed. We didn’t feel as alone as we knew there were other people who had their struggles and we could all talk to each other.”
As part of the support Claire House offers, Luke stays in the hospice for respite and enjoys a variety of activities.
“Luke loves everything sensory,” shares Diane, “When he comes into the hospice he loves going into the hydrotherapy pool and watching the lights.
“He can be so cheeky and this side is always on display at Claire House.
“There was a time when pulled out his tube and threw it back into the hydrotherapy pool so one of the team had to jump back in to find it.”
Claire House is always there for the family whenever they need help.
“There are times when it can feel too much, when Luke has had chest infections or very disturbed nights.
“And that is why we are grateful to Claire House.
“Luke is able to come in for respite and we can recharge our batteries, focus on his brothers, knowing Luke is having the best time at the hospice.
“I don’t know how we would have coped without Claire House.
“Luke regularly gets chest infections and at the start of the year was very poorly. He had RSV and bronchiolitis, and I had to be up with him every two hours even throughout the night. I was beyond exhausted and felt ill.
“But Claire House was amazing, offering emergency respite so I could recharge and feel better.
“Claire House has become a much needed lifeline for us.”
Claire House has not only been there for Luke and his parents, but his older brothers have also been supported.
“Dylan has loved going to the sibling events and has found them so much fun,” says Diane.
“Jacob has especially benefitted from having counselling sessions and also attending the sibling events.
“He has loved going on the residentials and meeting other children who are in a similar situation.
“He has never been able to be open with us but these siblings have become his friends and he talks to them. It has become such a reassurance for us that he has friends who understand what it is like to have a brother with complex needs.
“We don’t know what the future holds for Luke. There are so many obstacles and hurdles, there is never a dull moment with him.
“But we know that Claire House is there for us.”
“That is why we are asking everyone to take part in the Claire Bear 3k. We did it last year and are planning to do it again this year. It’s brilliant fun!”
The Claire Bear 3k takes place on Sunday 23rd June in Birkenhead Park and participants can run, walk or scoot the 3k route in support of Claire House.
“We took part because we wanted to give something back to the hospice that has done so much for us and other families,” shares Diane.
“We don’t know where we would be without Claire House and taking part in the Claire Bear 3k is the least we can do.”