Mum with rare disease to walk Humber Bridge for Kidney Research

A mother with an ultra-rare kidney disease is planning to walk across the Humber Bridge with her two young sons to save lives.

Kylie Canvess, 27, was diagnosed with a genetic kidney disease affecting fewer than 200 people in England and thought to have claimed the life of her grandmother Patricia when she was just 19.

Now undergoing kidney dialysis three times a week at Hull’s Dialysis Unit at Hull Royal Infirmary, Kylie is planning a sponsored walk with sons Jeye, 9, and Connor, 7, and other members of her family and friends to raise funds for Kidney Research UK ahead of this year’s World Kidney Day on March 14.

Kylie said: “It’s thanks to research that I’m here to see my children grow up.

“We’ve come so far because we think my Nanna had the same thing but they couldn’t save  her 50 years ago but they can keep me alive.

“This is my way of giving something back.”

Kylie’s grandmother Patricia Anne Canvess on her wedding day

Kylie, of west Hull, was diagnosed with focal segmental glomeruloscelerosis (FSGS), a type of kidney disease which causes scarring in the kidneys, in October 2017.

She had monthly check-ups with a consultant at Hull Royal Infirmary and was placed on medication but was able to continue looking after Jeye and Connor and hold down a job as a support worker for people with physical and learning difficulties.

However, last September, she experienced searing pain in her abdomen and noticed blood in her urine.

Her housemate took her to Hull’s emergency department and she was admitted while tests were carried out on her kidneys.

After numerous blood transfusions and plasma exchanges as well as two kidney biopsies, doctors discovered Kylie had atypical haemolytic uremic syndrome (aHUS), a rare disease believed to be genetic where abnormal blood clots form in the small blood vessels in the kidneys.

People with the condition normally require dialysis and drug therapy to keep them alive.

As well as special medication to treat her condition, Kylie also has dialysis three days a week for more than four hours each session and is currently undergoing tests to check her suitability for a kidney transplant.

Kylie said: “People don’t realise how important kidneys are until something like this happens to you or someone close to you.

“I’ve had to give up my job and it’s been difficult for the children. We can’t go on holiday because I need dialysis. They understand I have to do it but it does affect them because they worry about me.”

Kylie has set up a Just Giving page to raise funds for Kidney Research UK when she and her sons will walk across the Humber Bridge and back on Sunday, March 10, with dad Michael, brother Ben and sisters Kirsty, Kelly and Chelsea and  friend Lisa Crane.

She said: “Due to research and people funding research, they’ve found a way to keep my condition under control so I get to see my children grow up.

“I wanted to give something back because we have got to hope that in years to come, a cure might be found for this silent, life-long illness through research.”