Houston, TX!

With CLN3 Batten Disease, as of now, there is no cure or FDA approved treatment.

Although, there is a clinical trial with a drug that has shown promising affects to slowing down progression. The lead on the trial is Dr. Clark, at Texas Children’s Hospital. We knew we had to see HIM. We knew if anyone was familiar with this drug, it would be him. We wanted his expertise and knowledge, we wanted him to know Grayson.

After many calls to is office to try to get Grayson in, I received a call from Dr. Clark himself, he welcomed us to visit him and meet Grayson. Two weeks later we were on our way to Texas.

The medicine is used as a treatment drug for another disease with similar features, it has been proven to work in animals, and there is hope that it can work with children affected by Batten Disease (specifically CLN3).

If not covered by insurance, the medication is up to $18,000, if covered copays are priced around $1,500/month. This alone is a battle. This is part of why our fundraising is so important.

We’ll see Dr. Clark again in a year, we do have another appointment scheduled with a neurologist close to home, another known neurologist for this disease. More people who know Grayson’s name, the more they understand why a cure (or a treatment medicaiton) is so important.

P.S. Thank you Grandpa for coming with us!