Singing for Rett Syndrome
March 6th, 2012
Henbury Singers are singing for research into Rett Syndrome this year. Very few people have heard of this severe neurological disorder and yet it has nearly the same frequency as Cystic Fibrosis, affecting about 1 in 10/15000 girls. It is not inherited and could affect any family. It most often strikes previously healthy little girls just after they have learned to walk and to say a few words, and it begins to drag their development backwards.
Margaret Westgate, a Henbury Singers choir member, has a little grand-daughter, Carys, with Rett (see photo). Margaret says: “My pretty 4 year old granddaughter is usually happy and smiling but is totally dependent on others and will be for life. As she cannot stand or walk unaided, she spends her days sitting, unless helped and encouraged to move around the house. Constant hand wringing means she can no longer hold any of her toys, so keeping her stimulated is a complex task, although she does love various cartoons on the television! She has to be fed and given drinks. I can see that a little person and a mind do exist inside her uncooperative body. It must be incredibly frustrating for her not to be able to talk to people.
There is hope for the future – RSRT UK was formed by families of girls with Rett Syndrome across the UK. It is now realistic and urgent to focus on a cure, as in 2007 details of the reversal of Rett symptoms in a mouse model of the disorder were published. RSRT UK ensures that the maximum possible percentage of donations and funds goes directly to high-quality research; They know that the rate at which this research can progress depends directly on the funding available to pay for it.
Henbury Singers are holding their Spring Concert in aid of “Reverse Rett” – the charity for the families of children with Rett Syndrome. Vivaldi’s Gloria – wonderfully joyful – will be the main work, with Fiona Hunt and Pam Rudge as soloists. Richard Jones conducts. The concert is on Saturday 31st March at 7.30pm. at Trinity-Henleaze URC in Waterford Road. Tickets £8 ( £7) on the door or from choir members or ring 0117 9423122. Please support them.
For more information: www.reverserett.org.uk
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