Each time I think of Miami, I think of hope. Not great Cuban food, the ocean, or South Beach...hope.
When we met the group from the Brain Institute at Miami Childrens at the IDEA League conference, both Brian and I were impressed. We were not patients, but each of the doctors and staff members there took time to speak to us about Cole and about their program. I think we talked to their geneticist four times! They get it. This group of physicians and specialists get that my son has a life threatening illness that will not go away. They have a ion channel clinic once a month where kids with Dravet can come and see all of the doctors at once. You see everyone from the dietitian to the neurologist in one afternoon. They empty their waiting room and make accommodations for our kids. Then they have a support group afterwards with all of the parents. They have produced a great short video on Dravet; starring some of our friends. We really connected with a couple of the families in this video when we were in Connecticut. They were very warm and open to us, and then they became walking, talking billboards for this program at Miami Childrens.
I am so frustrated. I want to do everything I can for Cole and I know that these people can help me. I think any parent in our situation would be. It's just so hard that we can't give it to him. We are fighting the fight, but without cooperation from insurance, this is just not possible right now. My hope is that we get there...sooner, rather than later.