Sebastian’s Story
Sebastian was a healthy, curious, and playful boy, full of energy, dreams, and a deep love for life.
At age 11, small but noticeable changes began to appear. Simple tasks like holding a cup, writing with a pencil, or keeping his balance became increasingly difficult. What started as subtle signs led to a life-changing diagnosis: Spinocerebellar Ataxia Type 2 (SCA2), a rare, progressive, and degenerative neurological condition.
From the moment of his diagnosis in 2020, Sebastian faced each day with strength, grace, and extraordinary courage. As the disease progressed, he gradually lost many of his motor skills, eventually using a wheelchair full-time and relying on assistance for everyday activities.
But his spirit never changed.His joy, his curiosity, and his light continued to shine, touching everyone around him.
From this journey of love, resilience, and faith, Sebastian’s Hope Foundation was born.
Created in his honor, the foundation reflects the commitment of his parents, Karinna and Sergio, to transform pain into purpose. Throughout his life, Sebastian taught us what it truly means to face adversity with heart. Today, in his memory, we continue that mission, building a legacy rooted in connection, compassion, and hope.
Through advocacy, family support, and research funding, Sebastian’s Hope Foundation stands alongside families facing SCA2 and other rare diseases, reminding them that they are not alone.
Even in uncertainty, there is still space for dignity, meaning, and hope.
Together, We Carry Hearts on Wheels
At the heart of Sebastian’s Hope Foundation is Sebastian himself, a vibrant soul with a love for the ocean, an endless curiosity for the world, and a spirit for adventure that lit up every room he entered.
Whether dreaming about marine life, imagining his next journey, or sharing laughter with those he loved, Sebastian radiated joy and resilience.
Sebastian lived with Spinocerebellar Ataxia Type 2 (SCA2), a rare and progressive neurological condition, with extraordinary courage, humor, and hope.
His journey remains the heartbeat of our mission.
The Heart of Our Story
A Vision Rooted in Hope
A world where Spinocerebellar Ataxia Type 2 (SCA2) is understood, compassionately supported, and ultimately treatable—so that every individual and family can live with dignity, hope, and possibility.
A world where no family feels alone in their journey, where awareness replaces uncertainty, and knowledge empowers earlier diagnosis, better care, and stronger support systems.
We envision a future where communities, healthcare providers, and researchers come together with purpose, advancing understanding, accelerating research, and opening the door to meaningful treatments.
A future where children and adults living with SCA2 are seen beyond their condition, recognized for their dreams, their strength, and the life they continue to live with courage and love.
And above all, a world where hope is not just something we hold onto…
but something we come together to build—one life, one family, one story at a time.
Turning Vision into Action
Awareness & Education.
We shine a light on SCA2, making rare diseases visible and understood.
Family & Caregiver Support.
We walk beside families, reminding them they are never alone.
Advancing Research
We collaborate with global experts to accelerate research, improving treatments, and finding a cure.
