Cheeky Tyrion loves to make people laugh. With his big smile and sunny disposition, he makes friends wherever he goes. But, behind Tyrion’s smile is a little boy who’s had an incredibly tough start to life, with his family still searching for answers. Mum Jannine explains how Bluebell Wood’s support has helped her to find a sense of calm amid the chaos.

“In the first week of his life Tyrion suffered with sickness a lot, but my other two boys, Austin and Sheldon, were similar so I didn’t read too much into it,” she said.

“It meant that he wasn’t gaining weight properly, so we were in and out of hospital and had to try various types of special milk to see if he could keep it down. Nothing seemed to be working.”

Tyrion underwent various tests and many more appointments with specialists, but whatever they tried, he’d only take very small feeds. This continued for months until he began to vomit blood. Tyrion then spent the next three weeks in hospital.

“I looked at him, laid there helpless and all skin and bone. There was nothing to him and the malnutrition had affected his development too. This really brought it home for me and it was really scary.”

Eventually Tyrion was fitted with a feeding tube that connects directly to his stomach so he can get the nutrition he needs. While Tyrion and his family have got used to his feeds, they are no closer to answers around his complex condition.

“We have to live just not knowing, which is quite scary."

Despite the challenges, tenacious Tyrion takes it all in his stride

“He’s a very comical little boy. He’s very cheeky and very, very funny. People always take a shine to him wherever he goes.”

Since the family turned to Bluebell Wood for support, Tyrion has made plenty of new friends.

“When Bluebell Wood was first suggested I was quite shocked. I had no idea about the breadth of services the hospice offers to families”

Jannine soon booked a short break with the charity’s Community Team.

“The home visits have been absolutely brilliant. Tyrion loves it too. He has such fun playing with the Bluebell Wood nurses and support workers who take care of him.

“When they first visited, I went out for lunch with my sister which was the first time I’d really been away from him for any length of time.

“I do get over-protective so I struggle to leave Tyrion with other people. And when I do I feel like I’m on standby. 

“During the first short break I was very on edge at first but having that reassurance that he’s in safe hands made such a difference.

As well as short breaks, Jannine has joined the hospice’s book club and Tyrion’s older brother, Austin, has been using the charity’s  Sibling Support Service.

“It’s difficult when you have three children, but you have to devote most of your time to just one of them.

“Austin is a quiet boy who doesn’t open up much, so to have that extra support has been incredibly helpful. He has lots of fun at the support groups too.”

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