'Making as many memories as we can,' Hopedale embraces 6-year-old girl with rare disease
HOPEDALE - A 6-year old Hopedale girl has been diagnosed with a disease so rare her parents were told a doctor who has treated three patients with it is considered an expert.
Her name is Scarlett Hubsch. She's a preschool student at Bright Beginnings Center.
"She greets everyone, every day, with a giant smile and a giant hug," said Kristen Poisson, the school's principal.
Scarlett's parents say she used to run, jump, play, and speak full sentences when she was younger. But, that started to change three years ago when Scarlett had a seizure at dinner.
"We didn't know what to do," said Gina Hubsch, Scarlett's mother.
Initially told she had epilepsy, further testing revealed Scarlett had a rare nervous system disorder called Batten disease.
"Even our doctor was crying when she told us because it was a terminal diagnosis," said Jason Hubsch, Scarlett's father.
"Basically your kid kind of dissolves right in front of you," said Gina.
Scarlett's parents learned she would soon lose skills she had already gained like the ability to walk and talk on her own.
"I say that I grieve the child I had yesterday every day," said Gina. "Because whether it was a good day or a bad day, I'm not going to have that same kid again. So, it is a very slow progression."
The family moved from Texas to Hopedale in hopes of finding a treatment for Scarlett that could at least slow that progression at Boston Children's Hospital.
What they found in the meantime was a community that's truly embraced their 6-year old.
"What this school alone has done for my child, and for me as a mom," said Gina Hubsch. "To know that she's not gone. She's still there, and other people are recognizing it. That's all I could ask for as a mom."
"She has taught our young students so much about acceptance and inclusion," said Poisson. "Scarlett has been such a gift to the school this year."
Scarlett's family has embraced a mindset of making the most of every moment they get with their little girl.
"We couldn't hide away in our house and just cry over our child," said Gina. "We're making as many memories as we can. We're telling as many people as possible about her. We're letting people get to know her."
"That's the name of the game," said Jason. "Let's give Scarlett the best life we can while we can."
Scarlett's support system at her school, who call themselves Scarlett's Tribe, celebrated the 6-year old with a "Scarlett's Tribe Day" Tuesday before she graduates to kindergarten.
For more on Scarlett's story, visit her website.
