Scarlett’s Story

Site created on August 10, 2021


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!

Newest Update

Journal entry by Scarlett Hubsch

It has been a minute since I’ve last written. Honestly, I’ve written SO MANY blogs in my head, and just haven’t gotten them down on paper (so to speak). There have been things that I’ve wanted to share with everyone, but honestly, sometimes it takes so much mental energy to relive something, that I end up putting it off for another day, and then, well, I never get that boost of energy that I am hoping for!


I couldn’t let today go by without saying a little something. I promise to keep it as concise as possible.


Once I emerged from the devastating fog of Scarlett’s diagnosis, I knew I couldn’t sit still. I couldn’t be afraid to tell people what was going on. I couldn’t be embarrassed to ask for and receive help. I couldn’t stop living. That wasn’t fair to the little girl who had no idea what was happening. I owed it to her to keep going, keep advocating, and keep talking to everyone who would listen. 


Today was so special.


Nick Giovanni and WBZ News told our story in a way that I just couldn’t have. Sure, comments from Jason and I provided some color, but the way that our statements, and our grief, were woven in with the intelligence of Principal Kristen Poisson, and the laughter and love of Scarlett’s classmates’ in a sea of Teal…. It truly felt like the masterpiece that I never could have painted on my own.


6am Newscast:

https://www.youtube.com/watch?v=iyoU40i_lEM 

 

12pm Newscast: 

https://www.youtube.com/watch?v=JeNUqpL4gf4



I know that this story is tough to hear. It would be easier to ignore it and not get involved, but the sheer number of people that have reached out to say that they saw the news segment, and have expressed their thoughts has made my heart SO HAPPY. We’re being heard. Scarlett’s story is being shared, and you never know whose ears it may reach. Someone out there holds the key to changing the lives of Batten Families. Please keep talking about Scarlett. Please keep sending your good vibes, love, and prayers. We’re not going down without a fight.


Thank you for being a part of Scarlett’s Tribe


~Gina

 
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