Aug 25, 2021 Latest post:
Jul 25, 2022
ATTENTION: ***Please note that the "Tribute" Donation available here on Caring Bridge is money that goes to Caring Bridge directly (which is a wonderful entity). However, if you are interested in *donating to Scarlett, please use the "Ways to Help" link above to be directed to her GoFundMe page (www.gofundme.com/support4scarlett)***
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.
On June 5, 2020, on a hot Texas day amidst a wild pandemic, Scarlett had her first seizure (a focal seizure), and our lives changed forever.
Though Scarlett had been developing normally up to this point, aside from some tough-to-understand words, that seizure kicked off a crazy slide downhill. Scarlett started regressing. She forgot colors, she mostly only spoke in 3-word sentences. Then, she started falling for no reason. She became ataxic and walked around like a little drunk person.
In our quest to find out the cause of Scarlett's seizures, we did some genetic testing, and exactly one year and one month from the day of her first seizure, we were told that Scarlett had Batten (CLN2) Disease. In between her own tears, Scarlett's neurologist explained that this neurodegenerative disease would rob Scarlett of almost everything that she has - including her life - at a very young age.
Although it is not curable, CLN2 is the only form of Batten Disease that currently has a treatment. An enzyme-replacement infusion called Brineura is the only way that we can potentially slow down the progression of this terrible disease. It is administered every 2 weeks for approximately 5 hours through a port under the scalp and directly in to the brain's Cerebral Spinal Fluid.
As we do our best to bring Scarlett to specialists to help continue to use her skills, we hope and pray for the possibility of a gene replacement therapy that would potentially replace the brain cells that have become sick and died due to the disease.
Meanwhile, Scarlett is still her same happy, lovable self. She may have lost much of what she had only a year ago, her hugs have remained the absolute best in the world.
We appreciate your support and words of hope and encouragement. Thank you for visiting, and please keep those prayers, good vibes, and happy dances headed Scarlett's way!