The Burgess Family Story

When Natasha and Will Burgess’ daughter Daisy was diagnosed with Pitt-Hopkins Syndrome, they didn’t know where to turn. Pitt-Hopkins is a rare genetic disorder affecting less than 1300 children around the world, with little information and resources available online. It’s so rare that Natasha, an early years educator with a passion for working with children with special needs, had never heard of it. Children with this disorder often experience delayed developmental milestones, impaired speech and intellectual disability.

When the Burgess’ saw that UCSF Benioff Children’s Hospital was doing a clinical trial for the disorder, they were hopeful. But participating in the clinical trial meant relocating from their home in Canada to San Francisco for several months, and finding affordable housing near UCSF proved to be a major challenge. That’s when a friend recommended Family House.

From the moment the Burgess’ came to stay at Family House in October, they felt a sense of community.

“Family House is so inclusive and understanding. There’s zero judgement if you need anything. It makes us feel like a part of a community, rather than taking advantage of something. We feel like part of a family here.”

When she is not in clinic or being visited by a nurse, Daisy has been able to experience some of San Francisco’s best attractions during her stay at Family House. The Burgess’ have been to the Exploratorium, the California Academy of Sciences, explored local neighborhoods (and swimming pools!), and have participated in many Family House events. “We try to explore around the city every day,” Natasha says. “There’s always something new to discover.”

The Burgess’ will be staying at Family House until the end of February. When you support Family House, you allow someone like Daisy to participate in a life-changing clinical trial with her mom, her dad and her 7-month-old baby brother by her side.