Support for Scarlett
Scarlett Rae Hubsch was born in April 2017 to her proud parents, Gina and Jason Hubsch, originally from southern Massachusetts and currently residing in Grapevine, Texas. In May 2021, they welcomed a baby brother, Cody, to their family.
From the moment she was born, Scarlett had an infectious spirit that would bring a smile to everyone's face who met her. She has the warmest, most loving little personality of any child you'd ever met, and gives the greatest hugs and snuggles to all of her friends and family. She loves Wonder Woman, Elmo, dolls, and cuddles.
Until the spring of 2020, Scarlett was developing at a healthy rate when she began having seizures and trouble sleeping. Her parents brought her (mid pandemic) to Boston Children's Hospital to be tested for epilepsy or other issues that could be causing these problems. Scarlett has bravely undergone multiple MRI's, CAT scans, and neurological tests in the past year while the medical teams in Boston and Texas tried to find the root of her symptoms.
On July 2nd, 2021, they finally received a diagnosis and it was the worst possible outcome: Scarlett has been diagnosed with Batten (CLN2) disease.
Batten (CLN2) disease is an incurable, terminal, neuro-degenerative disorder that primarily affects the nervous system. The signs and symptoms of this condition typically begin between ages 2 and 4. The initial features usually include recurrent seizures and difficulty coordinating movements. Affected children also develop muscle twitches and vision loss. CLN2 disease affects motor skills, such as sitting and walking, and speech development. This condition also causes the loss of previously acquired skills and intellectual disability that gradually gets worse. While there is no cure, there are treatments available that can slow the progression of certain symptoms.
The family will be moving back to Massachusetts immediately so that Scarlett can receive all of her treatment at Boston Children's Hospital and be surrounded by her loving family and friends. This journey has just begun, but has already been an incredible financial drain on the family and there are many factors to consider including moving costs, housing, treatment, therapies, and most importantly... making sure that Scarlett can live the most joyful and comfortable life possible.
We are asking for your financial support for this little angel and her family. Any amount is so appreciated, and please do share this with your loved ones.
Due to the emotional and sensitive nature of this evolving situation, if you would like to send a message to Scarlett’s family, we ask that you send it via e-mail to 'smiles4scarlett at gmail' rather than to reach out via text, phone or social media. This will allow her parents to read your messages of support when they are able without feeling the pressures to respond immediately.
"The greatest good is what we can do for one another"