And I am scared shitless. For the past month or so, I have been talking with a pharmaceutical company called Synageva. They are working on a treatment for Wolman's Disease. Some of the people from there came from Boston and talked with Charlie and I a few weeks ago. They want to have us actively involved in the parent/family aspect of this horrible disease. They want to basically use us to get this disease and drug noticed in the medical community. Right now, there is no urgency. But we HAVE to change this. So I am headed to Boston on Sunday to meet with more of the team and get a better idea of what I need to do. I am ready for war against this disease. It is so unfair that there is really no good information out there about Wolman's. No websites. No support groups. Nothing. And there is no specific treatment. Gage's transplant was a desperate attempt to save his life. A lot of the babies with this disease are not healthy enough to even have a transplant. That is what Gage was just the 6th person to have the transplant. Synageva is focusing on Wolman's Disease alone (can you believe it!) and they are taking a different approach to treating it. I don't know how much I am allowed to share, but just know that they are VERY hopeful this will work. Now the main problem is to get hospitals, doctors, and families to KNOW that this drug exists (once it gets approved by the FDA). It's already a monumental challenge to get doctors, hospitals and families to KNOW that Wolman's Disease even exists. So we have a lifetime of fighting to do. But I am up to the challenge. I will do this for Gage because I WANT to and I HAVE to. Please cross your fingers and toes that I have a safe trip because I am TERRIFIED of flying. But I will face my fears for Gage. Gage was very brave for me...so I have to be brave for him. I will write about my trip when I get back next week. I am ready to help out other parents in a way that we didn't have help. Information. Hope. We felt so helpless that nobody knew about this disease. We could look it up and find one stupid paragraph. None of our nurses knew what it was. We got so many blank stares. If I can instill HOPE in one person, I will be more than satisfied! Off I go!
Gage...please be with me as I travel. Know that Mommy is doing this for you. I love you and I miss you. I wish I could have fixed it, but maybe I can help another mommy fix it for her baby. Forever, Mommy
