Nine years ago, we welcomed our sweet Poppy into the world—full of light, laughter, and endless curiosity. For years, we searched for answers to her developmental regression, never imagining the road that lay ahead. In June 2025, we learned that Poppy has Sanfilippo syndrome type B—a rare, fatal genetic disorder often called childhood Alzheimer’s. Just weeks later, we discovered that her baby brother, Oliver, has it too. Sanfilippo slowly steals a child’s ability to walk, talk, eat, and eventually to live. Most children with Sanfilippo B don't reach adulthood. There’s no approved treatment yet—but there is real hope. For the first time in history, a promising therapy is within reach.
We’ve raised $22,720, and with the match, that means we’re already at $45,440 toward our $500,000 goal! Every dollar makes twice the impact — help us keep the momentum going!
We are still racing toward the $3.8M needed by Thanksgiving to make treatment possible for children with Sanfilippo B. This page reflects a $250,000 match through the National MPS Society, so the goal here is $500,000 to unlock it. Together, families have raised over $2M of the $3.8M needed — hope is rising.
For the first time in history, a therapy for Sanfilippo Syndrome Type B is within reach. A door has opened that no family has ever seen before, and we have a narrow window to walk through it. And this moment isn’t just about one family. It has the power to change the future for Poppy and Oliver, and many others still waiting.
Sanfilippo Syndrome Type B is a rare, fatal childhood disease often compared to childhood Alzheimer’s. It slowly steals a child’s ability to talk, walk, eat, and eventually, to live. There has never been an approved treatment. Until now. A groundbreaking therapy is emerging, and families across the country are linking arms to help bring it forward. Together, we have the opportunity to make history for Sanfilippo B and open access to treatment for the first time ever. To move this therapy forward, $6 million is needed, with $3.8 million required by Thanksgiving to take the next critical step. This is our moment. We refuse to miss it.
Our children, Poppy (9) and her little brother Oliver (2), are full of light, laughter, and joy. They adore music, family walks, and each other. They are not defined by this disease. They are beautiful, vibrant children who deserve a future. We believe God has placed our family in this story at this exact time: not for sorrow, but for purpose. We’re not waiting for hope—we’re running with it.
This is no longer one family fighting alone. Parents across the country, leading experts, and nonprofit partners are coming together with urgency and resolve. We’re seeing momentum build in ways we never expected — medically, relationally, and in the hearts of people who are stepping in to help. What once felt out of reach is now becoming possible. We can’t do everything, but together, with God guiding our steps, we can do this.
Just months ago, we heard the words no parent is prepared for: “Your daughter has Sanfilippo Syndrome.” We were shattered. Then, weeks later, we learned that Oliver had it too. We prayed. We wept. We asked God for direction. And then doors began to open. Conversations we never expected. Experts we didn’t know how to reach. A therapy that seemed out of reach for years was suddenly closer than ever. The timing was nothing short of miraculous. This path is not guaranteed for any individual child — including ours — but this opportunity could open the door of access for dozens of children, and change what’s possible for every family diagnosed in the future.
Whether you can give financially or not, you can play a role in changing history.
We are moving forward in faith. We are believing that God is not finished, that He is opening a way where there wasn’t one, and that hope is rising for these children. Thank you for linking arms with us.
Thank you for believing for more. For Poppy. For Oliver. For every child still waiting.
Let’s make history for Sanfilippo B — together.
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