Illinois Family Fights Rare Genetic Disorder Affecting Both Children

The Kempf family is raising funds for a groundbreaking therapy to treat their two children diagnosed with Sanfilippo Syndrome Type B.

Apr. 3, 2026 at 6:07pm

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A ghostly, glowing X-ray image revealing the intricate internal structures of a child's brain and nervous system, conceptually representing the genetic disorder impacting the Kempf family.An X-ray view of the complex neurological impacts of the rare genetic disorder affecting the Kempf family's children.Quincy Today

The Kempf family in Quincy, Illinois, received devastating news when both of their children, 9-year-old Poppy and 2-year-old Oliver, were diagnosed with the incredibly rare Sanfilippo Syndrome Type B. After a six-year journey to get a diagnosis, the family is now working with nonprofits to raise $3.8 million by Thanksgiving for access to a new therapy that could serve as a bridge until a cure becomes available.

Why it matters

Sanfilippo Syndrome Type B is an ultra-rare genetic disorder that affects only about 30 children in the United States. The disease progressively robs children of their ability to walk, talk, and eat, with a life expectancy around age 15. The Kempf family's story sheds light on the challenges of securing a diagnosis and accessing treatment for such a rare condition.

The details

The Kempfs first noticed signs of developmental delays in their daughter Poppy when she was 3 years old, but the timing coincided with COVID-19 shutdowns, complicating their assessment. After years of appointments and tests, a simple cheek swab finally provided the answer: Poppy was diagnosed with Sanfilippo Syndrome Type B. Because the disease is genetic, the family then had Oliver tested, and he was also found to have the condition, making him the youngest person on record in the U.S. with the disorder.

  • Poppy first showed signs of developmental delays at age 3.
  • Poppy was diagnosed with Sanfilippo Syndrome Type B just weeks after receiving an autism diagnosis.
  • Oliver, now 2 years old, is the youngest person on record in the U.S. with Sanfilippo Syndrome Type B.

The players

Poppy Kempf

The Kempfs' 9-year-old daughter who was diagnosed with Sanfilippo Syndrome Type B.

Oliver Kempf

The Kempfs' 2-year-old son who was also diagnosed with Sanfilippo Syndrome Type B, making him the youngest person on record in the U.S. with the disorder.

Kyle Kempf

Poppy and Oliver's father, who is working with the family to raise funds for a groundbreaking therapy.

Megan Kempf

Poppy and Oliver's mother, who has described the family's six-year journey to get a diagnosis.

National MPS Society

A nonprofit organization the Kempf family is working with to raise funds for the therapy.

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What they’re saying

“She's very happy. She's got a lot of energy. She's loud and joyful and loves to sing. You can tell she's happy 'cause she's singing. You can tell she's mad 'cause she's singing.”

— Megan Kempf, Poppy's mother

“Oliver has his 2-year-old nopes, but you can hear him laughing a mile away.”

— Kyle Kempf, Oliver's father

“You walk into all these appointments and you feel like a crazy person. The doctor is just giving you generic like oh they are three, let them catch up, everybody learns at their own speed.”

— Kyle Kempf, Oliver's father

“To be told just a couple of months later that all that's standing between you and something is money, we were like well, that's nothing.”

— Megan Kempf, Poppy's mother

What’s next

The Kempfs are working to raise $3.8 million by Thanksgiving to access a groundbreaking therapy that could serve as a bridge until a cure for Sanfilippo Syndrome Type B becomes available. They are collaborating with the National MPS Society and Cure Sanfilippo Foundation to reach this fundraising goal.

The takeaway

The Kempf family's story highlights the immense challenges of navigating a rare genetic disorder like Sanfilippo Syndrome Type B, from securing a diagnosis to accessing potentially life-changing treatments. Their determination to fight for their children's future and raise awareness of this devastating condition is an inspiration to the local community and beyond.