Sofia's Story

Sofia and her twin brother Max were born on a rare warm and sunny October day in Portland, Oregon in 2008.

Blessed with a sunny personality, Sofia was the easiest baby to care for. As a toddler Sofia was bold, fearless and happy all the time. She was so brave her twin brother insisted on sharing her bed to feel safe at night. The world was their playground and they adored exploring new places together, meeting new people and just seeing the world around them.

They seemed invincible and yet our world was about to change.

One day a classmate’s mother mentioned seeing Sofia squinting to see the whiteboard and mentioned I should get her eyes checked again. A trip to the eye doctor told us spots were forming on Sofia’s retinas. We were sent to the nearby Casey Eye Institute for further tests and evaluation. The doctor who saw us looked at Sofia’s results and started to ask us more questions. Having googled all the diseases that have eye spots, I said defiantly to our doctor “Well even if she goes blind, at least it’s not Batten disease!” he said, “Well actually, I think it is…”

We were shattered. Destroyed. Gutted.

On that rainy day in April 2015 Sofia was diagnosed with juvenile Batten Disease (CLN3), a rare neurodegenerative disease. Batten means blindness in a child who could once see, it means progressive memory loss (dementia) and it always means an early death. Currently, there is no treatment or cure for this horrible genetic disease.

But this is a transformational story you see. Today Sofia has learned to navigate the world being mostly blind. She is still very brave and amazes us every day with her attitude and tenacity. She has learned to function with a poor memory and just keeps carrying on. We went to the saddest place imaginable and came out the other side. We survived on HOPE. We know our time with Sofia might be limited, but we savor every moment of every day with her. She has taught us so much about living well and with intention.

Now, we need YOU to join us. HOPE is on the horizon for Sofia and other children who will be born with this rare genetic condition, but we are running out of time.

Our family and Team Sofia’s Dream are dreaming up ways to fund a cure for Batten disease and save our Sofia and others born with this condition. Donations to Sofia’s Dream go directly to critical research needed to find a cure and stop Batten disease and keep children like Sofia dreaming on.



Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Bind Up Batten is partnering with BBDF to find a cure for juvenile Batten disease for Sofia and hundreds of other children.

The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!

Sofia’s Dream has a raised a total of:


What Supporters are Saying:

Contributor Comment
Marta Morse Supporting Sofia’s Dream
Anita Suazo Supporting Sofia’s Dream
Christopher Martell Supporting Sofia’s Dream
Michele Poirier Supporting Sofia’s Dream
Wendy Thompson Supporting Sofia’s Dream
Kimberly Graham Supporting Sofia’s Dream
V. Herbert Brady Supporting Sofia’s Dream
Marr ann Delassus Supporting Sofia’s Dream
Evite Fundraiser Supporting Sofia’s Dream
Christine Garcia Supporting Sofia’s Dream
Nancy Fierro Supporting Sofia’s Dream
Lydia Urbina Supporting Sofia’s Dream
Arlene McCashew Supporting Sofia’s Dream
Lisa Lam & Robert Kirsher Supporting Sofia’s Dream
Nancy Tvedt Supporting Sofia’s Dream
Marlo Urbina Supporting Sofia’s Dream