The last week had some HIGH highs and some LOW lows.
One really bright spot was our connection to the IDEA league. Already we have met incredible people. We also signed up for a conference, where we will get to meet Dr Dravet herself! The timing is impeccable, we signed up three days before registration closed. After working with non-profits for years, I am impressed at how organized, professional, and recognized IDEA is after only being around for 5 years. The right people are on the Board of Directors and we have already met some of them.
Something that has really hit us is how lucky we are to have this diagnosis relatively early. All of that research, and pushing doctors buttons was worth it. We are "those parents". Some people do not get diagnosed until they are much older and have already been put on sodium channel drugs. We are blessed to have been guided to "just say no" when those particular medications came up in conversations. We realize that this is a spectrum disorder and each kid is different. It is hard to know exactly what Cole's future will look like. We are so grateful for the internet and organizations like IDEA, which bring people like us together for information, validation and support.
Dravet comes from a genetic problem, like Down Syndrome, which our sweet friend Emma has. At this time, there is no surgery, medication or voodoo for gene repair. Only meds and therapies to treat symptoms. So, at this time, we know this will not go away. However, with your support and helping foundations like Bertrand's we can help to fund genetic research that can give these kids a better chance at life, and hope to their parents. Some people have asked, "What can we do?"; honestly, give a donation-even if it is a dollar. Every dollar helps kids just like Cole. Bertrand's parents are some of our greatest friends and this fund is a wonderful way to help.
Brian and I know that we have things to offer other parents going through something like this, and have found great satisfaction in our little Family Support Group. However, now is the time that we need support...and boy have we gotten it. Within 36 hours of the Dravet diagnosis, we were contacted by multiple families. Some who had already been reading this blog. We know that these people will become just as important and special to us, as the others in our Family Support Group.
Go to the IDEA website and learn more about Dravet. Knoweldge is power. The more people that know about it, the more they can educate others-and the world. Just an idea :)