I've had a very hard time concentrating on anything the last few days. Found out that my niece has Rett Syndrome. We've feared for some time that she hasn't been developing normally, but the reality still has been jarring. Sometimes I get so damn angry because it seems so unfair that this sweet, beautiful child, who has barely begun her life, essentially may be a prisoner in her own body.
I've been trying to be proactive. Looking up as much information as I can. Trying to see some hope in the recent research on Retts. The International Rett Syndrome Foundation is trying to win a grant to expand on some promising research. If any of you have a few minutes to spare, could you send a vote that way? Much thanks.