I'm not sure if this is the right place to post this, but I thought it may be of interest to some of the members here. (Mods: please move it to a better thread if I've put it in the wrong place.)
Many of the ladies on CraftTelly have been very supportive in the past, donating cards to raise funds for my DS1's terrible genetic condition: Fibrodysplasia Ossificans Progressiva.
On Ch4 Thursday 1st November there is a documentary about the condition if anyone is interested. Oliver isn't featured in the show but hopefully it will raise further awareness into the condition.
Over the past 8 months, some of the FOP families have been desperately trying to raise £120,000 to keep the research programme at the University of Oxford. Hopefully the show will take us another step closer to keeping the research in this country going.
Thanks ladies, I've never met Louise, who is featured in the show but from what I've heard she's a great girl, lots of fun! I haven't seen the trailers on tv yet myself so will have to look out for them.
Louise is also on This Morning tomorrow talking about her condition. She's been amazing promoting this show with all the newspaper articles etc. to raise awareness, not something I've felt ready to do with Oliver just yet. I probably should because he's quite a cutie (ok I'm biased!!!) and would get some attention too!
Watched the show last night and was really impressed at the postive way they dealt with the condition but with such a positive, supportive family behind Louise, never mind Louise herself, they could have done no other.
I am sure that Oliver has the same support from yourself and his extended family and when you and he feel able I hope that you too are able to share with the outside world your life. I also hope that the news that in the not too distant future, 5 years was I believe the time scale mentioned, that the advances that will enable treatment and perhaps a cure come to fruition,
TV Show about FOP
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