Upcoming Appointments

Infusions

Past Appointments

  • But First, Baltimore!

    We are heading to Baltimore by train to see specialists who are very familiar with Batten Disease. We leave on April 13th and see the specialist on April 15th.

  • The Works

    He’ll have an MRI and blood work (before the surgery) on April 19th. All routine works happening here!

  • The Surgery

    The surgery to implant the port directly into his brain will take place on April 23rd. It’s about a 30-45 minute procedure and will stay in the hospital for one night.

  • Infusions

    Approximately two weeks after the surgery, he will have his first infusion.