Family rally behind son at Liverpool charity walk
A mother from Cheshire has rallied family and friends to participate in Kidney Research UK's Liverpool Bridges Walk this September - supporting her son as he enters kidney failure.
Ewa Hulse, 52, is determined to raise awareness of kidney disease having lost her dad, Paul, when he was just 46 years old because of the same genetic disorder that her son, Sam, has inherited - Alport syndrome.
Although he will soon be starting dialysis treatment while waiting for a transplant, 24-year-old Sam Lacey will join the walk with his mum from Pier Head, Liverpool, on Saturday 6 September.
Ewa says: "We want to show Sam just how many people are here for him. There are so many people living with kidney disease and he is not on his own. It isn't something that just affects old people. Sam is only 24 and a lot of families are out there dealing with similar situations.
"We hope that our fundraising will raise awareness and help researchers make advancements to improve care for the future."
Alport syndrome
Ewa's dad, Paul, experienced kidney failure in 1981, needing dialysis for two years, before receiving a transplant in 1983. Tragically, being immunosuppressed to prevent transplant rejection made him more susceptible to illness, leading to non-Hodgkin's lymphoma which caused his death in 1996.
Despite this, Paul was never diagnosed with Alport syndrome and Ewa's family had no idea about the condition until Sam was diagnosed ten years ago.
She says: "When Sam was in primary school, we noticed blood in his urine and went through lots of tests, including a biopsy that revealed Alport syndrome. It was very upsetting and I was angry, wondering why this had happened to Sam. He is the best of us, and it felt very unfair.
"We were referred to a specialist at Alder Hey Children's Hospital who told us that it was genetic and Sam would need a transplant one day, like his grandad. We were given medication to delay the decline of his kidney function but knew that one day they would fail. Now that is happening, and Sam needs dialysis until he can receive a transplant.
"He is struggling more with symptoms such as fatigue, swollen legs and headaches. It means having to reduce his hours working as a chef – a job he loves. However, he continues to approach everything with a positive mindset. He doesn't want special allowances or people treating him differently. He just wants to get on with his life.
"Sam has not been the only person in the family affected. My three sisters and I are all carriers of Alport syndrome – and it has caused a lot of anxiety for all of us. Thankfully, my other two boys - Harry and James - have not inherited the condition.
"I would love to donate a kidney to Sam but being a carrier of the condition means I'm unable to do so. I'm really grateful other family members have come forward and we're hoping James will be able to start testing as a potential donor soon."
Making a difference
Not long after Sam was diagnosed with Alport syndrome in 2016, he turned his attention towards supporting others affected by kidney disease by joining the Kidney Research UK London Bridges Walk.
Ewa says: "We wanted to do something positive after receiving that difficult news and were able to raise some money to support research. It was a nice way to remember Dad and for the family to show Sam we're all here for him – and that is just as true this time around with the Liverpool Bridges Walk.
"It's lovely that the event is happening in Liverpool as it's a special city to my family. Dad spent a lot of his life there and a lot of our family have grown up in the city. I think it will be an emotional day. You can feel quite isolated as a family when you're going through something like this, so it's helpful meeting other people who understand from their own experiences.
"It's amazing how supportive people are when they know about what you're going through. We're grateful to everyone who has donated to help us support research. We've seen how much care has moved on from my dad's treatment to Sam's – who knows where we'll be in another 20 years.
"It's not going to be easy for Sam, as he will have to be careful with his health and take medication for the rest of his life. The transplant might not work, or he might need another one - we just don't know. Breakthroughs in research could make a massive difference for his future and to millions of other people."
Liverpool Bridges Walk
Whether you’re walking in memory of a loved one, celebrating a kidneyversary or supporting someone living with kidney disease, there is still time to join #TeamKidney at this year’s Liverpool Bridges Walk on Sunday 6 September.
Why not make a donation now?
Every £ counts towards transforming treatments for people living with kidney disease.