Pair put their best foot forward for Paige after heartbreaking diagnosis
A grandmother from Norfolk has been inspired to put her best foot forward to raise funds for Action Medical Research after her two-year-old grand-daughter received a devastating diagnosis.
Tracey McManus and her fiancé Paulo Perdiz, from Thetford, are tackling a number of challenges for the children’s charity after little Paige was recently diagnosed with metachromatic leukodystrophy, a rare genetic disorder.
Better treatments for leukodystrophies are needed urgently; the condition is currently incurable and many children eventually lose their lives, often by the age of eight.
Action Medical Research is funding a three-year study at the University of Cambridge led by Professor Robin Franklin to develop a new treatment for leukodystrophies.
The disorders cause the deterioration of tissue within the brain called white matter, leaving children often experiencing serious problems with movement, speech and development. This research, which began in December 2014 at the Wellcome Trust - MRC Cambridge Stem Cell Institute and the University of Patras, Greece, seeks to find ways to repair damaged white matter to relieve children’s symptoms and improve their lives.
Tracey, 49, says that while their efforts may not help Paige directly, she and her fiancé hope to raise funds to help children in future as recent estimates suggest at least one in 7,663 newborn babies is affected by different leukodystrophies.1
“It will be too late for Paige by the time researchers hopefully find something but it will maybe be something for others in the future,” she says.
“Paige started seeing doctors in November when we noticed her development was going backwards and she continued to go downhill. An MRI scan in March confirmed some sort of brain disease and we received the heartbreaking news on 20 June.
“We thought we would try to do something positive so all the members of the family are pulling together to do what we can to help others who may be going through the same thing.”
Paulo will be taking part in Trekfest in the Brecon Beacons on 6-7 June, crossing the highest peaks in South Wales, and then he and Tracey will both be trekking along 25 miles of Hadrian’s Wall from 11-13 September to raise money for Action Medical Research.
To support their fundraising efforts, please visit action.org.uk/sponsor/pauloperdiz1966
For more information on the study to develop a new treatment for children with these devastating rare conditions, visit action.org.uk/our-research/leukodystrophies-developing-new-treatment-children-these-devastating-rare-conditions
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- Brain Foundation. Leukodystrophy. http://brainfoundation.org.au/medical-info/178-alzheimers-disease Website accessed 1 December 2014
For an image of Paige Scott, please click on the link below:
For an image of Tracey McManus and fiancé Paulo Perdiz, please click on the link below:
NOTES TO EDITORS:
For more information on Action Medical Research, contact Ellie Evans, Fundraising Communications Officer, on:
T: 01403 327480
Action Medical Research is a leading UK-wide charity working to save and change children’s lives through medical research. We believe that the diseases that devastate the lives of so many of our children can be beaten. We have been funding medical breakthroughs since we began in 1952 like the first polio vaccines in the UK, ultrasound in pregnancy and the rubella vaccine – helping to save thousands of children’s lives and change many more.
Just one breakthrough, however small, can mean the world. Charity reg. nos 208701 and SC039284.