Hi Val
Kim has gathered together a group of people to work on a charity event to raise money for Sethi, the poorly boy you have mentioned previously on TAG. I've put together some information on Sethi and on the fundraising event (currently a work in progress) and wondered if you could put it on TAG.
Love Debbie ( Jardin des Espiemonts )
Sethi
Regular TAG readers may recall the story of the poorly 3 year old boy, Sethi, who has been battling Wiskot Aldrich Syndrome, a rare bone marrow deficiency. His mother, Azizah, is hoping that a bone marrow donor can be matched to Sethi before the end of the year, as he will otherwise have to undergo a very expensive and experimental new treatment of gene therapy. This is a difficult, unpleasant alternative and Sethi would need to be isolated from everybody for a long time, as it would involve chemotherapy which would further damage his already compromised immune system. So we’re hoping that a compatible donor can be matched to him, but as his current medication has harmful side effects and can’t be continued, then unless a suitable doner is found, this new treatment is his only hope.
There are lots of misconceptions about bone marrow donation, with many people thinking it’s a painful, invasive process. Did you know about peripheral blood stem cell donation? (PBSC) With this system, bone marrow isn’t collected from your bones, but stem cells are collected from your blood.
The nhs web site has useful information on bone marrow donation:
If anyone wishes to register as a potential bone marrow donor, you can do so here:
http://www.dondemoelleosseuse.fr/becoming-a-donor/
For more information about Sethi you can look at his website (in French) and view a short film (in English):
For more information about Sethi you can look at his website (in French) and view a short film (in English):
http://princesethi.wix.com/sethi-petit-prince
http://www.youtube.com/watch?v=eKcsThNazp4
http://www.youtube.com/watch?v=eKcsThNazp4
CHARITY FUNDRAISER
Friday 6th December, 6pm - 10 pm, Parisot Salle de Fete
We're going to hold a fundraising event to raise money to contribute to Sethi's medical expenses. At this point in time we've booked the Salle de Fete and have a number of ideas for how to raise some much needed money whilst also giving people a good night out.
Current ideas include a Father Christmas Grotto, hip hop and Zumba, face painting, art and craft sessions, singing and music workshops, fancy dress competitions, games, live music, jamming sessions, disco and a bar. The overall plan is to have a really great, fun event that everyone will enjoy, at the same time as providing much needed support to this poorly child.
How you can help
We're looking for volunteers to help organise the event and contribute to running it on the night. We're going to have a tombola stall and hold an auction and are looking for donations of items. The run-up to Christmas is a great time for having a bit of a sort out, so if you have any items you would like to donate, they would be gratefully received. Also, we're searching for bands and someone who can do the disco. We’d love to hear any of your ideas of what else to include in the event, so please get in touch! Contact Kim Ilsley on: kailsley@hotmail.com or phone: 05 63 24 21 72
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