In January 2017, we set out on a mission to find a cure for our daughter Mila’s devastating condition, Batten Disease— a disorder that rips abilities, and then life, away from children. In January 2017, we set out on a mission to find a cure for our daughter Mila’s devastating condition, Batten Disease— a disorder that rips abilities, and then life, away from children.
UPDATE: After fighting for Mila's life day and night for almost one year, it seems unreal that we are telling you that a LIFE-SAVING treatment could be in sight for Mila in JANUARY.
As you know, we've worked so hard to start the first gene therapy for Mila's type of Batten Disease. Just last week, we teamed up with two Batten foundations who are helping us fund this trial which takes a huge burden off of us. And thanks to your support, the trial is scheduled for Fall 2018. We are so excited. However, we have been so scared that Mila won’t make it to this trial.
BUT an incredible thing happened a few months ago. A brilliant scientist in Boston heard about Mila and had ANOTHER idea of how to save her life - using a technique that actually reversed a similar disease. We were so nervous to tell you. But we are on the cusp of making it happen, and Mila could be treated this January. The lab tests on Mila's cells are showing unprecedented improvement, and so many teams of people are now donating time and expertise to bring us across the finish line, with a BRAND NEW drug to bear on Mila’s terrible disease.
We’re SO close. But Mila is declining every day. Her seizures are getting more frequent. We need to raise $700K by December 20th to make this happen for Mila.
We would never have gotten this far without our amazing community, and now we've never needed you more.
Please consider giving anything at all - no donation is too small. All donations are TAX DEDUCTIBLE.
There’s no other way to put it—my 6-year-old daughter, Mila, is dying. I lie by her side every night when she sleeps and my heart bleeds. My face burns from the tears.
Fund Raising Team
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