Ryan's Story

Life was perfect for Alison and Rob Jones and their two gorgeous little blue eyed boys Ryan, who was 3 years old, and new baby Rhys. They felt their family was complete and they couldn’t have been happier.

But then Ryan stumbled while playing and, what appeared at first to be a simple sprain, propelled the family into a worrying world of hospital appointments, scans and specialists and towards a diagnosis that changed all their lives forever.

Ryan had a serious neurological disorder and, because it was an inherited condition, the chances were that Rhys had it too.

“I just felt numb, completely numb, like someone had pulled the rug from under our feet. We’d got two lovely bouncy little boys and suddenly this happened. Words can’t describe how we felt,” recalls Alison.

Ryan’s condition was called Krabbe Leukodystrophy. Alison and Rob were told there was no cure and that their little boy probably only had 12 months to live. Thankfully Rhys’s tests were clear.

“Our world just fell apart and from that moment life instantly changed as our focus was getting the best help and treatment we could for Ryan,” says Alison.

“It was a whirlwind of emotions too as we were coming to terms with having two children whose paths were completely different. Rhys’s life was just beginning and Ryan’s was sadly starting to end.”

There are no words to express how utterly devastating it is to face life without the child you love.

Alison and Rob were initially unsure about using a children’s hospice. They cared on their own for Ryan as his illness progressed for 18 months. Then a social worker who knew Hope House well persuaded them to visit with the boys.

“I remember walking through the door and being met by one of the nurses, who is a great guy, and I remember thinking, ‘You are jolly, you’re happy, but you want to be here and I don’t want to be here’,” remembers Alison.

“But I’ll be honest – coming to Hope House was the best step we ever took. There are two things I would change if I could. One, I would wave a magic wand and Ryan would never have been ill, and two, we would have come here sooner. But we had to get here in our own time.

“We were treated like a king and queen and little princes at Hope House. That continued throughout our whole time here for respite care and even after losing Ryan.

“We had sibling support for Rhys because while Ryan was terminally ill Rhys wasn’t – he was growing up throughout this journey. He’d also got to come to terms with the fact that his brother wasn’t always going to be around. Hope House helped us to answer Rhys’s questions and support him.

“When Ryan died and was in the Snowflake Room we stayed for the whole weekend.  As a bereaved parent, no one wants to think of their child lying in a mortuary at a hospital or at a funeral directors. At Hope House there was a nurse to look after Ryan even when he was in the Snowflake Suite after he had died. At a time when you can’t care for your child Hope House can and that is massive.  I knew Ryan had the next best thing to Mummy and Daddy. That gave me overwhelming comfort.

“Hope House really has been the core of our journey. It helped us when our world was completely shattered and falling apart. They’ve given us the strength, hope and encouragement for a journey that no parent wants to travel.

“And we’ve got happy memories of the hospice and I’m so proud Rhys also has happy memories. He’s lived a journey that certainly Rob and I never lived at his age and he’s happy and he wants to keep his brother’s memory alive. I’m really proud of that.

“We are still trying to come to terms with what has happened because for us Ryan wasn’t born poorly. He basically slipped away in front of our eyes. And no parent wants that. You walk on fire for your children don’t you? But he was a fighter to the end and I think that is what he has instilled in us.

“That is one reason why we have a Tribute Fund in aid of Hope House. It’s to give back to Hope House for the excellent care we had whilst Ryan was going through this journey. We couldn’t have coped without them.”

Currently three local families a week face the pain of losing their child. We can currently only afford to help one and this breaks our hearts. Please give if you can.

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Your help is vital so that we can provide the care and support that our children, young people and families so desperately need. We must raise over £6.3 million every year to maintain our services and receive just one month's funding from statutory bodies.

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We offer a range of services including respite and end-of-life care at our two hospices and/or within the family home, and support such as counselling and advocacy. Bereavement support is offered to all children, young people and family members for as long as is needed.

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