Jasper's Story

Meet Jasper

Jasper was born in 2017, and first started showing signs of being unwell at around eight months old, his lack of appetite, how lethargic he was, the constant high temperatures. He wasn't a happy baby in the way an eight-month-old should be. As first-time parents, it's so hard to know what's normal and what isn't. You question yourself constantly: are we overreacting?

The Diagnosis

Over the next six years, Jasper had multiple bouts of pneumonia and years of hospital admissions. It felt like his body had simply adapted to being unwell. There were times he seemed clinically well, no temperature, normal oxygen levels, smiling and giggling like any toddler should, but as a parent, something instinctively still felt wrong.

Once Jasper started school, it meant more infections to catch, and long periods too unwell to attend. He missed out on holidays, clubs, and the everyday things other children his age were doing. He couldn't even stay at his grandparents', the one time he did, he ended up in hospital, miles from home.

Jasper lived in and out of hospital for six years with no answers, just relentless pneumonia, until after several tests, he showed no reaction to his booster immunisation jabs, leading to a transfer to the Cardiff Immunology team. Walking into a room full of people was petrifying, but there was almost a sense of relief in finally being told that something had been wrong all along. Jasper was diagnosed with a rare genetic mutation, APDS, and for the first time, there were answers, and a cure.

The Struggle

This led to our journey from South Wales, up to the Great North Children's Hospital in Newcastle, for a life-saving bone marrow transplant. We had to relocate over 250 miles from home, to a city we'd never been to before, leaving friends, family, and everything familiar behind, all while dealing with no income, and a mortgage and bills still to pay.

As a dad, it was incredibly hard watching Jasper go from running around, playing, disco dancing like any other child, to becoming so unwell and weak during his chemotherapy. After twelve rounds of chemo, there were days he was so exhausted I had to physically support him just to get him in and out of the shower.

Jasper had good times and bad times throughout his treatment. He danced his way through transplant where he could, even in the hardest moments.

On top of everything, his mum was made redundant, and I took a sabbatical to be there for Jasper. We'd exhausted our savings, and were trying to find any financial help we could, that's when we were put in touch with Louie's.

How Louie's Helped

When we read Louie's story we felt an instant connection, other charities had turned us away, ones supporting families going through the same treatment, like chemotherapy, simply because Jasper's rare diagnosis didn't fit their criteria. Louie's never once made us feel like we didn't belong.

Louie's provided monthly financial support, alongside seasonal gifts at Easter, Jasper's birthday, and Christmas, for the whole family, not just Jasper. They were there on the end of the phone for one-to-one support whenever we needed it, and helped share Jasper's story to raise awareness for other families facing the same fight.

Louie's were there for us then, and they're still there for us now. We couldn't be more grateful for everything they've done for us as a family, not only financially, but as friends we could talk to.

Where Are They Now

Jasper is doing so much better. He's a healthy, happy child, finally able to enjoy the things he missed out on for so long, and now he's running races for Louie's, taking real pride in doing it for other families still going through hospital life.

He's also found joy in cooking and drumming, which have become a huge part of his confidence and personality. Seeing him now, running, playing, and simply being a child again, is something we will never take for granted. We'll always carry what we went through as a family, but we're so grateful to be in this chapter now, one where Jasper gets to live his childhood.