May 20 2013 Latest news:
Dominic Bareham, senior reporter
Thursday, November 15, 2012
A Norfolk fundraiser is currently completing a gruelling trek to raise money for a charity fund set up in memory of a little girl who died just two weeks after being diagnosed with rare Alpers Disease.
Hazel Brookes, of The Street, Alburgh and her friend Rebecca Ui Bhraonain started walking the 200km from Great Ormond Street Hospital in London to Southwold on Monday and are due to arrive on Saturday in time to take part in the Adnams 10k run on Sunday.
All the money raised from their adventure will go to the Anna Lewis Brighter Future Fund set up in memory of 11-month-old Anna, who was diagnosed with the rare Mitochondrial disease Alpers which causes seizures.
She spent time at Great Ormond Street where she underwent a series of intrusive tests before being diagnosed with Alpers and the cash will help pay for the hospital’s Mitochondrial Research Unit.
An information and donation stand will be set up for the run to raise awareness of Mitochondrial disease and to help the duo achieve their fundraising target of £85,000.
Prior to the challenge, Mrs Brookes said: “We are taking on this challenge in memory of a beautiful little girl Anna Lewis who had the biggest smile.
“In February last year our friends, Jess and David welcomed their second little girl into the world and their family was complete.
“Anna was a healthy baby when she was struck down by a mystery illness on January 19, aged 11 months.
“She was taken into intensive care following seizures and eight weeks later at Great Ormond Street Hospital, following numerous intrusive tests, was diagnosed with Alpers’ Disease, a rare Mitochondrial disease. She only lived for another 2 weeks after diagnosis.
“Currently, there is no cure or even treatment for Alpers. In Anna’s memory, we want to help change that,” she added.
Mrs Lewis said: “The worst part of this disease is that nothing can be done. There is no treatment let alone a cure. All the staff at Great Ormond Street Hospital could do was make Anna comfortable. The staff there were wonderful and you could tell how much they loved Anna”.
For more information on the condition, visit The Lily Foundation at www.thelilyfoundation.org.uk/our-inspirations/anna-lewis/ or for sponsorship visit www.justgiving.com/A200khikeanda10krunforAnna.