It’s mid April in 1981. We have two children, a daughter who is seventeen months old and a son of four months. Lou and I are really happy, the children are our pride and joy and my work as a consulting design engineer is going well. Our only worry, that the girl was pushing herself up but has stopped doing so, is being checked out by a doctor. He has told us not to be concerned while he investigates what could be happening … “it’s probably OK”. The door bell rings and the doctor is there. He says he was visiting the hospital round the corner from us and had some news so he thought he’d drop by. A consultant. Making a home visit on spec. We ask him in … too polite to be scared yet.
Tea is made and the doctor spends two hours very gently explaining that the news he has is not good but, despite appearances to the contrary, the sky has not just fallen in. He names what he thinks it is not … Werdnig Hoffman Syndrome … “but don’t look it up because I’m almost certainly wrong”. Looking it up means going round to a library, no internet, so harder to do than nowadays.
It was good advice, the eventual diagnosis, Intermediate Spinal Muscular Atrophy, is also hereditary but less lethal.
Still drinking tea, still chatting, and he says “she’s going to need wheels”. He can’t remember saying it but he did; I know, it’s a major thing in my life and I was there. So now I’m a practising design engineer trying to find the thing which will help my daughter … I expect to find it, the thing that some other dad has made to help his kid so that I can help mine.
It’s not there.
I’m really angry. “Why can I not buy a wheelchair for an eighteen month old child? … because they couldn’t drive it! … Why could they not drive it? … Because they’re only eighteen months old! … Has anybody ever tried it to see if they could? … No! … Why not? … Because they’re only eighteen months old! … WTF?”
So now I’m a design engineer who’s angry and can’t buy the thing his daughter really needs. What next? So I build the machine which got christened ‘The Yellow Peril’ after the nick-name for smoked haddock in our family … Ruth, our daughter, had insisted it should be painted yellow. She learned to drive it in a few weeks which pleased the large number of my engineering friends who had been hugely helpful in getting it designed and built (CCL I can not thank you enough, nor Rog, Paul, Steve, Roger, Alan, Dave, and many, many others for their input and encouragement). I should also mention that the prototype was built and Ruth started to drive it by mid August of that year … didn’t get painted for a bit, though. I might also say that they were taking bets as to just when I would be admitted to the local mental hospital … I may have become a little single minded!
Then I was going to build a red one.
Sam, Ruth’s brother, had driven the Yellow Peril once … I know, I have film of him doing it. He did ‘Round and Round Backwards’ really rather well. I never got to make it for him though as he fell foul of one of the things which can get you when you have SMA, a sudden chest complaint which turned into pneumonia and stopped him … it took one day.
So now I’m an angry design engineer and there’s other kids who can’t get the thing they really need. What am I supposed to do next?