“So, what’s that drug he’s on?”

Will gained access to the drug Baricitinib in July 2018 through an expanded access program offered by Eli Lilly at CHOP. Dr. Vanderver has been Will’s primary neurologist, and he is mainly managed by the Leukodystrophy team at the Children’s Hospital of Philadelphia.

Another parent wrote a great blog post about starting drug treatment for AGS as early as possible. Will’s friend Ellie began the drug treatment within a few months of being diagnosed with AGS, and she has made huge gains. Some of us see small gains, some of us see fewer flares, some of us wonder if our kid is more irritable at times. Overall, we think our kids feel better because of the drug.

Here’s a link to the post I referred to above.

Will has changed quite a bit since starting the drug Baricitinib. Most of our friends and family can see that he is thriving. He’s happier, growing, and very much aware of what’s happening around him. In June we will return to Philadelphia for a lot of testing. He will have his one year check that includes research testing, a visit with his cardiologist, and seeing his team of providers.

Thank you for following along. We feel fortunate to have such an amazing group of people caring for our boy.

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