Scarlett

A Batten Disease Warrior

Scarlett Rae Hubsch was born in Grapevine, Texas, in April of 2017 to her proud parents, Gina and Jason Hubsch. Scarlett also gained a new little brother (Cody) in May of 2021! Scarlett 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’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 MRIs, 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 had been diagnosed with Batten disease (CLN2). Batten disease (CLN2) is an incurable, terminal, neurodegenerative 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, including sitting and walking, as well as speech development. This condition also causes the loss of previously acquired skills and intellectual disability that gradually gets worse. While there is no cure, treatments are available that can slow the progression of specific symptoms.

Upon receiving this diagnosis, Gina, Jason, Scarlett, and Cody all packed up and moved from Texas to Massachusetts to be closer to Boston Children’s Hospital, where Scarlett now receives infusions of Brineura every other week. Scarlett now has a g-tube and can no longer walk. She has fought bacterial meningitis, status epilepticus, and respiratory failure. However, she still has the most infectious smile and makes us laugh every day.