Last year, we learned that our 4 year old son Oren was dying, that there was no cure, no treatment, no fight to be won. But you can help him have a chance to live. *donations are tax deductible*

Our Story

Oren is an outgoing and joyful 6 year old boy who loves playing with his younger brother and sister and his cousins. He is expressive, has a contagious smile and laugh, and loves others unconditionally. When he was born, he had several minor complications which required surgery to correct. But according to doctors, the surgeries went well and there was nothing to be worried about going forward.

However, when Oren was 2 years old, we began to notice challenges: difficulty learning to talk, developmental delays, chronic bowel issues, and trouble sleeping. We immediately started him in speech therapy and enrolled him in a preschool program to support his development.

Despite early intervention, constant specialist visits, and our efforts at home, something still wasn't right. Not only was Oren not improving, his condition was worsening.

After two years of doctor visits, research, and questioning, we still had no answers, no clear path forward to help our son. Not until a family friend, who is a nurse, saw a video on TikTok with a child who had symptoms strikingly similar to Oren come across her feed. The child had Sanfilippo Syndrome. The more we learned, the more we knew this was what Oren was facing. We contacted our pediatrician asking for a referral to a geneticist so he could be tested for Sanfilippo Syndrome. We were quickly referred to the nearest children's hospital, where testing began. `

On July 31st, 2024, we learned that our 4 year old son Oren tested positive for MPS IIIB -Sanfilippo Syndrome Type B- a terminal disease with no cure and no available treatment. Commonly referred to as "Childhood Alzheimer's," Sanfilippo will take everything from him. He will lose his ability to speak the few precious words he knows, Oren will lose his ability to chase after his siblings and cousins, he will eventually forget all those he loves most. And then he will die.

But now there is HOPE.

Just over a year after his diagnosis, there is a treatment option available for children with Sanfilippo Type B. We need $6 million to fund a treatment that could be available for Oren and other Sanfilippo kids by next summer. $3.8 million is needed by December 1st. This is truly a medical breakthrough in the world of Sanfilippo/MPS. We believe that you can help our Oren get his miracle. For months, we laid by Oren's bed, praying and crying out for his healing and for a cure, and we promised we would do whatever was in our power to fight for him, for a cure, for better quality of life. We didn't know if we had the faith it would take to believe for a miracle, but now there is a path that could lead to one. Our hope is that bringing awareness to this rare childhood disease could help Oren and other beautiful Sanfilippo children have the opportunity to share their lives with us a little longer.

Whether you can give financially or not, you can play a role in changing history.

How You Can Help

1. Pray


Pray for the children impacted by Sanfilippo B. We believe that God is opening doors and that he is not finished with this story yet. Hope is rising. We have seen God moving in every step of our journey with Oren.

2. Give


A gift of any size makes a difference.

Your gift doesn’t just help our family — it helps create access for many children battling this disease.

Other ways to donate:

--Donate on the Cure Sanfilippo Website (transaction fees apply; donors may opt to cover them): https://give.curesanfilippofoundation.org/campaign/653569/donate

--For gifts of $500 or more, checks may be made payable to:

Cure Sanfilippo Foundation

P.O. Box 6901

Columbia, SC 29260

3. Share


Awareness is key.

Share our GoFundMe. Just click the "share" button. Tell your community. Text it to a friend.

One share could be the one that changes everything.

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