By Theresa Knapp 

Scarlett Rae Hubsch was born in April 2017 to Gina and Jason Hubsch, then of Texas, now of Hopedale.

Scarlett’s parents say their daughter has had an “infectious spirit from the moment she was born that would bring a smile to anyone who met her. She has the warmest, most loving little personality of any child you would ever met, and gives the greatest hugs and snuggles to all of her friends and family. She loves Wonder Woman, Elmo, dolls, and cuddles.”

Then, in June 2020, just after her third birthday, Scarlett had her first seizure (a focal seizure), and the family’s life changed forever.

 

According to the Hubsch family blog at www.caringbridge.org/visit/smiles4scarlett, Scarlett had been developing normally up to that point, aside from some tough-to-understand words but then she started regressing. She forgot colors and spoke mostly in three-word sentences. Then she started falling for no reason. She became ataxic and walked around as if intoxicated. 

It would take a full year, genetic testing, and a team of doctors in Texas and Massachusetts before Scarlett would be diagnosed with Batten disease (CLN2), a “neurodegenerative disease [that] would rob Scarlett of almost everything that she has - including her life - at a very young age.”

The disease is not curable but is the only form of Batten disease that currently has a treatment, which Scarlett receives at Boston Children’s Hospital. Treatment includes an enzyme-replacement infusion called Brineura that can potentially slow down the progression of the disease. It is administered every two weeks for approximately five hours through a port under the scalp and directly in to the brain’s Cerebral Spinal Fluid.

Today, Gina Hubsch describes her daughter as “incredibly affectionate, social, and happy. Her standard greeting to someone - adults and children alike - is to lean in for a hug. If you happen to get a kiss on the top of your head, you really know she likes you! Scarlett loves to laugh, sing, and dance. If it involves music, she’s here for it.”

Neighbor Justine Taylor met the Hubsch family through a Facebook group for their neighborhood when Hubsch was looking for childcare for her younger son. Taylor and another neighbor decided to have a fundraiser to show support for the family which included the sale of “Scarlett’s Tribe” signs. The first batch sold out quickly and another order was placed. To date, they have sold 120 signs, which can be purchased via Taylor by Facebook message or email [email protected]  

Hubsch says the welcome her family has received in Hopedale has been unbelievable and “feels like we’re being given the biggest hug by our new community.” 

“To be honest, it’s hard to convey in words what this campaign means to us. My heart is bursting. One of my concerns for Scarlett, upon receiving her diagnosis, was that she would no longer be able to be that social and giggly kid that we had come to know and love. I was afraid that people would become nervous around her, not know what to say, and avoid her. For a kiddo who thrives on interactions with others, this was heartbreaking to think of.” 

Hubsch says that, since moving to Hopedale, their experience has been the opposite.

“This campaign was completely unsolicited by our family, and was the genesis of a couple of kind neighbors who met Scarlett and wanted to do something to help. As anxious as it makes me to put our family out there like this, it’s ultimately not for me - it’s for Scarlett. 

Hubsch says her hope and goal is to introduce Scarlett to as many people as possible. 

“Not only does it have an impact on our quest for a cure for this devastating disease (you never know where people may have connections), but when people smile at Scarlett, or wave and say hi, she lights up. It really makes a positive impact on our day.”

Friends also set up a GoFundMe page at https://bit.ly/3sL3E4Z to support the family. Hubsch says, initially, the funds were used for a physical move from Texas “back home to Massachusetts so that we could spend as much time with family as possible.” Now, the funds will be used to “create memories and bring joy in so many ways. Time is incredibly precious for us, and it passes quickly. These funds are allowing us to take advantage of the ‘now’.” 

They hope to sign up Scarlett for therapeutic horseback riding lessons to help with her balance, and get her an adaptive bike so that she can ride around our neighborhood. They are also working with a contractor to plan ahead to build a walk-in shower that will allow bath time to become less stressful as Scarlett’s mobility continues to become an issue. Anything that will make Scarlett’s day more fun, or her life a little easier - goes on the list. 

Hubsch says the GoFundMe donations make it possible to make Scarlett’s “wishes” a reality much faster than if they had to try and do it all on their own.

“We are eternally grateful for every dollar, and always credit donors when we’re able to put the money toward something amazing - such as the service dog that Scarlett will be getting from 4Paws for Abilities in 2024. Past donations allowed us to get Scarlett signed up, and pay the contribution fee immediately instead of having to do a separate fundraiser and add 6-12 months on to what is already a 2-2.5 year wait list.” 

For more information on Scarlett or the disease, visit smiles4scarlett.wordpress.com/  

Courtesy photos.