Trevor and Charmaine White have a campaigning weblog with the 'headline' mission statement: "To find a cure for Mitochondrial Disease and Save Our Son". Brave people whom we can only wish every success. Let's hope they avoid the burn out that afflicts so many parents who set out on similar courses. I have lost count of the number of times over the past years that I have wondered whether, if I had known what I know now, I would have ever have begun the journey. (And that is no counsel of despair or defeatism. Just reality. "KBO" was apparently how Churchill signed off his transatlantic phone calls with Roosevelt. "Keep buggering on.")
Trevor and Charmaine also have a website, which is just as well. There are many disabilities and conditions that I know nothing whatsoever about. Mitochondrial disease is one.
Apart from yet another set of brave parents battling "the system", the posting on their blog caught my attention in other ways too:
- Trevor and Charmaine's enthusiasm for conductive education, and for an unexpected condition;
- their understanding that CE is a school-based system of learning - near enough, I reckon; especially compared with those who still use the language of therapy;
- that the mainstreaming funding for the CE programme is under threat sounds all-too-familiar;
But two thoughts, especially, struck me: the first, here is another powerful parents' blog, like "Terrible Palsy"; where are the blogs from UK parents setting out their battles, for instance, for conductive education for their children? I'd be delighted to learn of any. The second, how many CE programmes are there across the world, with mainstream or Government funding. It might be interesting (and politically useful in campaigns) to have a list. How might we go about compiling such a list?
I'd like to end this post with what drives parents, time after time - Hope.
Trevor, Charmaine - my wife and I said the same 20 years ago, when we first encountered conductive education, the same Hope. I have only this to tell you: it's not about the walking, it's about "the new little boy" Jack is, about his "learning", about doing "things for himself". From one parent campaigner to two others, my very best wishes to you both - and to Jack too.