Background

We are always looking for other children like Dominic. Dominic currently has no unifying diagnosis, which means that we can’t ever really answer the question, ‘what’s wrong with him?’, unless you’ve got long enough to listen to the extensive list below. It can, of course, be very awkward when trying to fill in forms that give you one small box to write your child’s condition in, and trust me, I come across a lot of those, but really the hardest part of having no diagnosis when you have a medically fragile and complex child is the unknown. I have no idea what to expect, what the significance of each illness or issue might be and what the future might hold. It can be frustrating, maddening, terrifying and devastating, and you really are stumbling in the dark for a lot of the time, but because the question mark continues to hang over you, there can’t be any closure, or moving on. I’m not sure what cards I’ve been handed yet, but that doesn’t mean that I haven’t found a certain peace in not knowing, instead of staring into the void, I instead search for other parents asking the same questions that I am, in the same situation I find myself in, and that is why, if you look down this page, you’ll see a comprehensive list of the general things that are issues for Dominic. If you find this list because you are searching for answers for your own child, think about contacting me, I’d love to say hello and I might be able to point you in the direction of other families too. There are people who know how you’re feeling.

I have great plans to change what having an undiagnosed child means to families, and when I am not hanging about on Just Bring the Chocolate I can be found over at SWAN UK working on promoting better understanding of the impact of having no diagnosis has on families. These are families who are often forgotten, unable to access local resources and services offered to disabled children, no charities to support them, no parents to say ‘I know exactly what you mean’ and no bookshelf to turn to to find out what the future might hold. Support should not have to start with a diagnosis, and families shouldn’t get lost in the system when the system runs out of technology to diagnose them. There is no government funding to help, but doesn’t stop us making as many steps as we can towards educating doctors, teachers, local authorities and even the government to recognised that just because a child doesn’t have a label, it doesn’t make them invisible.

I have thrown open the door on our family life to invite you in, including sharing Dominic’s medical history, which is below. I hope that you will find yourself laughing and crying with us as we do our best version of winging it… after all when there is no handbook, what else can you do? I hope you will take away with you a sense of just how human we are, stupid, silly, amazing, quirky, chaotic, hopeful optimistic. After all this time, we are still very optimistic. We can change the world. So help me change the one that my beautiful boy is growing up. Please share this website, help me find people, and then perhaps things can start to change. We can’t change the child’s medical condition, but we can change the information and care that families receive.

Diagnoses to date