Welwyn Garden City man fundraising after nephew diagnosed with rare liver disease
PUBLISHED: 12:20 31 August 2018 | UPDATED: 12:24 31 August 2018
A Welwyn Garden City man is taking on the Great North Run in aid of his nephew, who was born with a rare liver disease.
Rob Constable, 47, is heading up to Newcastle for the event on Sunday, September 9, during which he will be raising money for the Children’s Liver Disease Foundation (CLDF).
The charity has become important to the family after his nephew Isaac was born with Alagille Syndrome – a rare genetic disease which can affect the liver, heart and other organs.
Isaac’s mother Liz, who lives in Stevenage, said a few days after he was born she noticed he was continuing to lose weight and his stools were a very pale colour.
Despite doctors’ reassurances, she was convinced something was wrong, and the problem eventually came to light when a health visitor saw a dirty nappy.
“She looked really worried and said she would call me as soon as she had consulted with colleagues,” Liz said.
“I now know that pale stools are a key indicator of liver disease in babies but because it is rare, most new parents are unaware of this.”
After being told to immediately take Isaac to her GP, Liz was sent to A&E, and then onto King’s College Hospital, where there they saw a paediatric liver specialist.
Experts then diagnosed Alagilles, and pointed the family in the direction of CLDF.
Liz said: “We have found their information on Alagilles really helpful, not only for our ourselves, but to explain Isaac’s condition to our family and friends. We also know that they will be there to support Isaac as he grows up.”
She said they were lucky that her son’s diagnosis was quick and they received such fantastic care, but added more needs to be done to raise awareness of the disease in children.
“This is part of the work which CLDF do and one of the reasons we want to help them,” she added.
“Alagilles is a lifelong condition and we don’t know what Isaac’s future holds, but what we do know is we have fantastic support.”
She continued: “My brother in law, Rob, was gently persuaded he needed to do the Great North Run for them.
“Unable to resist the opportunity to run against Mo Farah, he took up the challenge!”
To donate, visit www.justgiving.com/fundraising/robert-constable5.
For more information about CLDF visit https://childliverdisease.org/.