In support of our South West Children's Research Appeal, Suzanne and her son Harrison have shared their story about the life-changing research trial he took part in at Bristol Royal Hospital for Children.

Suzanne's son, Harrison, has Cystic Fibrosis and was part of a research trial at Bristol Royal Hospital for Children

"My son Harrison, now 11, was diagnosed with Cystic Fibrosis (CF) in the first three weeks when he was born. I’m a carrier and his dad’s a carrier, but it was quite big news for us. We didn’t expect it at all."

"His lung function started to go downhill. It was pretty poor at 70%. 

It was quite scary because he’s always been an active child. He was starting to get a lot more hospital admissions. He started looking a bit dark under the eyes. Life had become bug after bug after bug.

"They offered a new CF drug trial and I said yes, I wanted to give anything a try to make Harrison better. I just wanted him to be better by the end of it, wouldn’t you?"

"It was the best thing we’ve ever done really. He’s gone from 70% lung function to 94% and he’s been on the trial now for about 19 months. It’s amazing."

It’s had a massive impact for our family. I’d do it all over again.

"It’s easy to manage. Harrison takes two tablets in the morning and one in the evening. He just has to have it with a fat-containing snack, like a packet of crisps or a chocolate bar and he has no problems with that at all!

I live in Somerset, about an hour and a half away from Bristol Children’s Hospital. It’s priceless to me that hour and a half. It’s amazing.

We absolutely idolise Dr Tom Hilliard. He is amazing. Because I’m a mum of a child with CF, I just dwell on the negative. The negative always outweighs the good. It’s part of being a mum of a child with an illness. With Tom it’s totally different. He talks to me in a way that I understand and encourages me to see the positives.

All the staff are amazing as well, they all try their hardest and make us feel welcome. They make Harrison feel very comfortable doing the bloods and they have a little laugh and a joke with him. They think he’s hilarious.

I can’t fault any of them for what they’ve done to reassure me and make sure that I understand what’s happening and where we go from here and there."

If another family were approached about a research trial, I’d say don’t hesitate, just go and do it. You’ve got nothing to lose.

"Everybody we know can see how massively different he is health-wise. You wouldn’t know unless I told you that he’s got CF. He still plays football, still kicks a ball around, still rides his bike, he’s an active young proper boy. I feel that the CF drug has helped him so much to do all that."

 

It's definitely given us a new way of life

"I never thought I’d see that light at the end of the tunnel and now I have. He’s a totally different child."

Now I’m fine to let him breathe, have his freedom. I let him go out on his bike and I was having heart palpitations. I wouldn’t have allowed that if we hadn’t had this drug. I’d be worried he’d be coughing or he’d need his inhalers. It’s definitely given us a new way of life. It’s priceless. I couldn’t ask for anything more.

I would love to do another study. If I was offered the chance if later on they found something new. It’s helped Harrison feel like he’s in the same world as his school friends.

The hospital staff are all amazing. They’ve made us feel so welcome. I would never look back now."

They’ve changed his life. I’m quite proud to say that because it’s amazing what they do.

"It’s 100% teamwork. It’s not just one person it’s all of them."

  

Did you know Bristol Children's Hospital is the only big children's hospital in the UK without a dedicated research facility?  This means life changing research trials like Harrison's are restricted. Patients and families are left without hope. Hope for a better future. Hope for a cure.  With your support we can change that. We can give hope and opportunities to thousands children across the South West who are living with life-limiting conditions.

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MORE INFORMATION ABOUT OUR SOUTH WEST CHILDREN'S RESEARCH APPEAL

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