So, I have learned that the most effective way to deal with all that RETT entails is to have a huge sense of humor. Sometimes mine may border on the sick side, but it does help me get through those baaaad RETT days. People who lives with Rett syndrome children knows there’s a chance that, one day, you won’t be living with it any more. You hear – too often – about the death of someone’s child, and you try to imagine how it would feel if it were your family facing such a loss. We all know about it, but we try not to dwell. We put our energies into looking after our daughters, making sure they have everything they need, and trying to make their lives as good as possible. With any leftover energy, we try to learn about Rett syndrome and the potential for treatment.But sometimes something happens that makes you focus particularly hard on what your family lives with – and what the future might hold. Last year 2013 news outlets in the UK have been filled with reports about the very sad death of Rosie McLoughlin, the 14-year-old sister of Coleen Rooney, wife of the English footballer Wayne Rooney. It’s clear from the news reports that her family loved her very much. And it’s sad that it takes a tragic loss like this to bring Rett syndrome into the news, given both its prevalence (it’s as common as cystic fibrosis) and its potential for treatment. Hearing Rett syndrome being talked about in the context of one family’s loss reminds parents of why we do what we do. Thru research we believe will transform our daughters’ futures. It renews our determination not to accept that nothing can be done, and reminds us of the hope engendered by recent progress in Rett research.
Posted on: Fri, 11 Oct 2013 20:16:49 +0000
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