The inspiration for creating this website comes from being mum to Elliott. Elliott was born in 2002 and was diagnosed with a very rare chromosome disorder just before his first birthday.
The impact of rare chromosome disorders can vary greatly but many babies are born sick and/or disabled with no clear prognosis for the future. The prognosis we were given for Elliott, when he was diagnosed, was vague and uncertain. We were told a lot about what he might not be able to do in the future, such as ‘he might not be able to walk’ but the truth was the medical professionals just didn’t have the information to give us a clear prognosis, Elliott’s condition was too rare for that.
Now, more than ten years after his diagnosis, we know much more about how Elliott’s condition has affected him; he has moderate to severe learning difficulties, global development delay, some challenging behaviour and mild physical difficulties. But that is just part of the picture. We also know that Elliott has the most adorable personality with a fantastic sense of humour, along with being very affectionate and very determined (aka stubborn!). I can honestly say we have laughed more as a family than we have cried, as a result of having Elliott in our lives. We’ve been told ‘he might not…’ many more times, since that first ‘he might not walk’ but so far, these predictions have proved to be wrong. They were right, in so far as he hasn’t done things in the same timeframe as his peers, but with patience and determination (his and ours!) he’s got there in the end with things like walking, writing, talking and reading, so who knows what else he will achieve in the future. Of course, I’m not saying this is what everyone living with a rare chromosome disorder has experienced, but this is our experience.
So, why create a website?
1. I regularly hear of parents who’ve just received a rare chromosome diagnosis for their baby or young child, and I recognise those feelings of fear and despair that I once had. I want to tell them all about Elliott, how much he has taught us and how, despite the grey hairs we’ve gained over the years, what a positive, rewarding experience it can be parenting a special needs child. When Elliott was first diagnosed, I was desperate for some practical information about his condition, or conditions similar to his, but all that seemed to be out there was clinical, scientific information, there was very little that was based on real life experiences from the families.
2. I often find myself having to explain Elliott’s condition to medical professionals. I also know that family and friends are keen to understand Elliott’s condition but they don’t always feel they can ask, or if they do, it can be quite hard to explain about it clearly. From now on, I can point them at this website!
3. Over the years, I’ve spent loads of time searching for the information, resources and equipment that we need for Elliott. Once I’ve found a useful website, I want to be able to find it again easily. So I’ve added some useful, disability related links and information to this site, and will continue to add more as I find them. So feel free to make use of the useful links on this site.