Helping us to feel like a family

Francis House stepped in when the Nesbitt family needed them the most.

Tina and Jack Nesbitt at Francis House

Jack Nesbitt and his mum Tina

The first few months of Jack Nesbitt’s life were completely normal then the family’s world was turned upside down.

Jack’s mum Tina explains: “I had a normal pregnancy with Jack, we didn’t get any idea that anything could be a problem or an issue with him physically. Then Jack stopped feeding, he wasn’t smiling, and he was crying constantly. Every test came back with normal results, so we were sent home with a feeding tube.”

For the first few years of Jack’s life the family struggled without a diagnosis, knowing only that he was profoundly disabled.

Finally at four years of age Jack was diagnosed with Aicardi-Goutieres syndrome a rare genetic disease resulting from mutations in several genes. Jack’s immune system is constantly on high alert, fighting his own body, which has left him with brain damage.

“Jack’s pretty much like a newborn baby – he can’t hold his head up he doesn’t talk. He is fed by a tube, but he’s got an amazing smile, and he loves watching other kids. He loves his big sister Sophie, and he’s got quite a wicked sense of humour – he laughs at some good stuff.”

The family were referred to Francis House by their neurologist who explained that support would be available for the whole family.

Family at Francis House

“Being given the news that Jack wouldn’t have very long with us, and trying to explain that to Sophie, was quite a daunting thing. Francis House helped us with that. They have loads of experience in knowing what happens to siblings, and what they go through, so having their support and their understanding is brilliant,” says Tina.

"When you come to Francis House, it's a lot nicer because the staff can look after your sibling, and then you get to do what you want, and have some free time to yourself. You can talk to other people and do stuff."

Sophie Nesbitt

Tina says: “So much of your attention is on the child that has lots of medical needs and interventions, you do feel that there isn’t as much attention on their siblings. We try and make sure that we have time with Sophie on her own, Francis House looks after Jack so that Sophie gets her own time with us.

“They have stepped in when we really need them – if we’re at a point where we’re desperate for a break they’ve really helped us feel like a family again.

"It's somewhere where you can come and remember what it's like to be a mum or a dad or a parent, rather than a nurse doing medical interventions."

Tina Nesbitt

“In the future we know that we’re not going to have Jack around with us, and we know that Francis House are going to be here for us when that time comes. We’ve been shown around the Rainbow room – they’ve always been very open about that; we know that’s where Jack is going to stay, and I know that we’ve got a plan for when that does happen.”

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