This month I have been reading a lot about research and clinical trials that are currently going on for the treatment of Batten Disease. There are drug trials, gene therapy trials and a new trial currently recruiting for children with the juvenile form of the disease. This is always fantastic news for our small community of families that watch our children live with this disease every day.
It gives me hope that what we are doing with our fundraising efforts will soon pay off for our children.
But I'm also frustrated. Although these trials will hopefully lead to a cure to at least one form and eventually all forms of the disease, Nicholas never fits the criteria for any of these trials. When a cure if found, will Nick qualify for the treatment?
Nicholas has the Infantile form of Batten Disease. This form is normally diagnosed in children six months to 2 years of age. Nicholas was 6 when he was officially diagnosed. Unlike the "normal" infantile form, Nick produces a small amount of an enzyme that rids the body of waste. Because of this, his progression is much different and much slower moving. For this we are thankful. But, this also excludes him from the possible trials for his form. He is either too healthy or too old.
Am I greedy? Yes. I should be happy that his life expectancy is much higher than it could be. But that is just it. He still has a much shorter life expectancy than the average American. And what this disease is doing to his poor little body is so unfair.
I want to do everything in my power to keep Nicholas healthy. I don't want to see what they tell me is in his future. I refuse! There for I have hope; For Nick and for the other 500 children in this country with Batten Disease.
Thank you to everyone who has supported us with our fundraising efforts. Without this it would be hard for me to hold out hope of a cure in the future. This is what keeps me going...
Our last event - A Cure for Nick Golf Outing and Auction - raised over $19,000!! This is an amazing feeling!
