Today I finally watched the video from my Treacher Collins Syndrome (TCS) group about a little boy who died on September 27 2010. I cried so hard. My heart goes out to the parents of Darren. I am so sorry for your loss. Words cannot express the sadness I feel at the moment. My heart also goes out to Jamie Rose Mahan, who at 27 lost her life to TCS. There have been so may complications due to Treacher Collins Syndrome and I am forever grateful that, for today, my son is alive an well.
So to all those parents out there, take a second and hug your child, you never know if it will be the last.
2 comments:
I'm sure there is quite few people who refuse to wear their bi/c pap but Jaime had additional problems, did she?
I believe so but I think the main cause of her death was not wearing the bi/c pap. So sad. Mason is having a sleep study done next month and I am a little worried that they will make him wear something at night. But who knows.
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