A year ago eight-year-old Ella Chadwick couldn’t walk, and spent most of her time in hospital, but next week she’s taking part in a 1.5k run.
Ella, from Rochdale, was born with Congenital Nephrotic Syndrome, a rare and incurable disease that leads to kidney failure and leaves sufferers with debilitating swelling and extremely tired and weak.
She was diagnosed at eight weeks old, at a routine check-up, and was rushed straight to hospital after the doctor discovered a heart murmur and a swollen liver.
Talking about the experience Karen Hughes, Ella’s mum, said: “I just sobbed there and then.
“From then she was in hospital until she was nearly seven months old.”
BATTLER: The run next week will be the second Ella has been involved in.
She had both her kidneys removed when she was only a year old, and had to go into hospital for daily dialysis to keep her alive, meaning that she couldn’t go to school.
Ella’s mum hadn’t heard about Nephrotic Syndrome until the diagnosis and was even warned by doctors not to research it, so severe is the chance of death at a very early age.
She said: “We didn’t have a clue about it. We’d never heard of it when we were told.
JUST CHAMPION: The run is all the more remarkable as Ella could not walk 12 months ago.
“The consultant said, we have good news and bad news, the good news is that we have a diagnosis, the bad news is the diagnosis.
“The doctors warned me not to Google it, but I did and I immediately wished I hadn’t. All I remember reading was that there was a high risk of death before the age of 5.
“We survived day by day, at the time we couldn’t think about the future”
ENJOYING LIFE: Since her tranplant Ella has been doing all the things that would have been near-impossible previously.
But since a life-saving transplant, with a kidney donated by her grandma Christina, Ella can now start to enjoy all the things she has missed out on.
She loves musical theatre, singing and dancing, all things that would have been near-impossible before her transplant.
Karen says the family are now relishing the normal everyday things that most of us take for granted, and that the change in Ella has been dramatic.
She told MM: “She can go to school every day, she has more energy, and can learn and take more of an interest in things.
“She’s grown up so quickly in the last year.”
FAMILY SUPPORT: Ella with mum, Karen, and dad Martin have been through so much.
Ella will be an honorary starter at The Morrison’s Mini Great Yorkshire Run in Sheffield, and will complete the 1.5km course alongside the other participants.
It will be her second Great Run event, and she loves the excitement of the day.
Her mum said: “She loves to be the centre of attention. She blows kisses, waves and bows for the crowd!
“It’s so good for her, because she’s finally doing something she’s never been able to do before.”
As there is currently no cure for Congenital Nephrotic Syndrome, Ella will continue to battle health problems, but it doesn’t seem like she will let them stand in her way.
As her mum said, after her success at the Great Manchester Mini Run last May Ella kept saying: “I just want to do more!”
