Hope Grows Here

Program: TUBB4A

Tessa is a sweet and determined little girl whose smile can brighten even the hardest of days. Born in October 2023, she was diagnosed with TUBB4A-related leukodystrophy, a rare neurological disorder that affects the white matter of the brain. Although the condition brings challenges, Tessa’s gentle spirit, resilience, and joy continue to inspire everyone who meets her.

Tessa’s journey to diagnosis began early on when she was diagnosed with low muscle tone at 12 weeks old, and soon after, her therapists observed nystagmus, a condition that causes her eyes to move involuntarily. When she still wasn’t meeting developmental milestones, her parents trusted their instincts and pushed for genetic testing. At just seven months old, they learned that Tessa had a de novo TUBB4A mutation, giving a name to what they had been seeing and allowing them to begin understanding her unique needs. While the diagnosis was heartbreaking, it also brought clarity and a path forward for her care.

Since then, Tessa has faced more obstacles than most children her age, but she approaches life with incredible strength and determination. Her days are filled with physical, occupational, and speech therapy, where she works hard on skills that many take for granted, like holding her head up, sitting with support, and practicing standing. Every bit of progress is celebrated with love, pride, and hope. Tessa’s smile melts hearts, and her spark shines brightest when she’s doing the things she loves most. She’s the happiest in the water, playing with her dog Burt, and spending time with the people she loves.

For everyone who knows her, Tessa is a daily reminder of what truly matters. Her courage has taught her family to slow down and celebrate every tiny victory, and her laughter fills their home with hope. Thanks to n-Lorem, there is now a path forward – one that gives her family renewed strength and optimism for Tessa’s future. Even on the hardest days, she continues to show that love, patience, and determination can create something beautiful: a life filled with meaning, joy, and endless love.

* In 2025, Tessa received her first dose of a personalized experimental ASO medicine discovered and developed by n-Lorem