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Spring 2021
Margaret’s card upcycling funds rare research
CHAPEL-EN-LE-FRITH resident Margaret Newman is using her card upcycling skills to raise much-needed funds for research into a rare genetic condition. Margaret’s granddaughter Ellie was diagnosed with cystinosis when she was 13 months old while her non-identical twin, Molly, does not have the condition. Margaret told The Review: “Cystinosis is so rare that even when both parents have the faulty gene that can lead to the illness there’s only a one in four chance that their child will inherit it. There are only two or three new cases diagnosed each year in the UK, affecting about 190 people. Globally, it’s around 2,000, and because it’s so rare research money is almost non-existent.”
Two years ago, Margaret started raising funds to find better treatments for Ellie and others with the condition by selling upcycled cards to family and friends: “Ellie has a very cheery attitude to life and takes everything in her stride. She’s five now and attends Chapel C of E Primary School with her sister. Currently there’s no cure, just a lifetime of frequent day and night medications to attempt to slow the progression of the disease which causes amino acid to accumulate and damage the cells in the body. Kidneys and eyes are the first organs to become damaged in young children, and it can lead to muscle wasting, bone deformity and diabetes.”
Margaret’s granddaughter, Ellie
Continued on p3
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