When Christy Barrett found out she was pregnant with her son, Harrison, she and her husband, Gavin, were over the moon, but unfortunately her pregnancy did not go the way either of them were expecting.

At their 20-week scan, Christy and Gavin found out their baby, Harrison, had clubfoot. This led to lots of further tests, which came back clear. When Harrison was born in May 2016, he was diagnosed with congenital myotonic dystrophy, and couldn’t breathe or move without help. He was transferred to a children’s hospital, where he had to have several operations. In December, he was put on end-of-life care.

When doctors told Christy and Gavin about Bluebell Wood, they decided to go and take a look round. Christy said, “We quickly got a good feel for the place. Everything - from the nurses’ station to the family rooms - felt like a home from home.

“We came to Bluebell Wood for Christmas, which was an amazing experience. The team made it feel so special for all of us. Being here meant Harrison’s big sister Isla could enjoy herself and we could all have family time together. It was much more laid back than it would have been at home.

“As Harrison was on end-of-life care, we made every day count. However, against all expectations, Harrison started to improve in the New Year and we were told he didn’t need to go back to hospital. He was taken off end-of-life care in March and we were able to care for him at home.

“Although it’s fantastic to have Harrison at home, he needs constant care and there are times when we need help. Bluebell Wood’s doctor comes out to see us when we need support. We’ve had a lot of training so that we can give him the best possible care.

“There have been times when staying at Bluebell Wood was just what we needed. We spent a week here one summer, where we had a family room with Isla, and Harrison had his own room. We could sleep all through the night knowing that Harrison was being looked after by the Care Team. We spent a lot of time with Harrison in the sensory room, we relaxed in the hot tub, watched films in the cinema room and Isla had a ball running around with George the dog.”

Christy added, “Nowadays we come to Bluebell Wood a couple of times a week so that Harrison can use the sensory toys and equipment we can’t easily find anywhere else.

"Being here gives us a chance to play with Harrison, enjoy a freshly cooked lunch and meet up with other families. It’s really nice feeling that we don’t stand out and that we’re all in a similar boat."

“Bluebell Wood are fantastic with Isla. Being at Bluebell Wood gives her the chance to enjoy herself and spend time with other sisters and brothers who are going through a similar experience as her.”

Amy Panton, Bluebell Wood’s Sibling Support Co-ordinator, said, “It’s been fantastic seeing Isla’s confidence grow since she started coming to the sibling group and the family fun days at the hospice. Since she started joining in she’s done all sorts of things, from holding birds of prey to getting in a fire engine.”

Christy added, “Harrison has improved a lot over the last few years. He doesn’t need oxygen at the moment and he can stand using aids at home. Whatever the future may bring, knowing that Bluebell Wood is there to support us all makes a big difference.”


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