I am the poster child for the necessity of this day. Although Fragile X has been in my family for many generations and showed its face for the first time in full mutation form in my generation, I was completely unaware of its existence until my own son was unexpectedly diagnosed.
Today is a day for spreading the word so that more families are spared the shock of having this disorder explode unexpectedly in their lives. Today is a day for spreading the word so that more families get the diagnosis and the help that they need when their child is still young. No family should have to search for years for an answer to the symptoms their child exhibits.
I know most people who are reading this know someone, or have a child, with Fragile X and so already understand the importance of awareness. We are the soldiers in this battle. There are many people who are making decisions on research and brainstorming ideas to raise awareness but it is those of us who are living this day in and day out who can take direct concrete action to raise awareness everyday. You don’t need to orchestrate a fundraiser. You don’t need to take part in an article for your local paper or a national magazine. You can just talk about your child to everyone who will listen. Tell the waitress, tell the person sitting next to you on the train, tell your co-workers…write about it on your blog! Buy these cards and stick them in every letter or bill that you mail.
Every little bit helps, the more people we reach, the more families we help.
And if you have some money to spare, donate. Every little bit helps.
An excellent post Umma. It is Fragile X Awareness day in Australia too and I have been trying to do my little bit to help spread the word.