Back in November 2023, we received the devastating news that Scarlett also has Batten Disease (CLN2) just like her older brother, Silas. While the news was expected, it’s something that no parent wants to hear. But thankfully Scarlett was diagnosed early, which gives her a huge advantage when it comes to her future quality of life. Studies have shown that when diagnosed early, children are able to receive treatment via an infusion every two weeks, before even showing symptoms of the disease. This treatment will help delay symptoms from starting which will allow her to have as normal of a childhood as possible before the disease eventually progresses.

Scarlett is scheduled to begin the treatment process during the first week of March, when she will have surgery to have her port placed, then a week later she will begin infusions with her big brother. While infusions are typically every two weeks, we’re facing a hardship of having to travel to D.C. for seven weeks in a row in order get Scarlett started on treatment and be seen for pre-and post-op appointments. With the increased travel to D.C. comes an increased cost of gas and food for the family during those times.

We’re asking for any donation that you could consider providing to our family. We’d be eternally grateful for any help that you can offer. We’ve also created an Amazon Wishlist with some things that would help us with Scarlett while she is in the hospital overnight for her port surgery.

Thank you all so much for taking the time to read this. Your support means the world to us.

#SparklesforScarlett