Navigating a Forever Home with a Rare Disease: Daniel’s Story

As national adoption month closes, meet rare disease and adoption advocate Daniel Price. Daniel was born in Hangzhou, China and was adopted to the U.S. when he was three years old. Three years later, Daniel was diagnosed with a rare disease.

Daniel lives with Tuberous Sclerosis Complex (TSC), a rare genetic disorder that causes tumors to form in different organs, like the brain, heart, kidney, skin and lungs, causing seizures, developmental delay and intellectual disabilities. TSC has impacted Daniel’s brain and skin, causing him to experience a number of seizures as a child as well several intellectual challenges. Despite these challenges in life Daniel realizes that his experience could be far different had he not been adopted.

Daniel has had multiple opportunities to return to China to explore his birthplace. His first trip returning to China came in 2005 as his parents were adopting his younger sister. He visited the orphanage he was adopted from and met two of his caregivers as well as an adoption counselor – each of whom remembered him specifically and called him by his birth name in Chinese. On an adoption tour in 2007, Daniel visited an orphanage outside of Beijing, where many children were put up for adoption because of a particular medical condition. Each of these experiences afforded him a surreal opportunity to reflect on his own journey in being adopted and living with a rare disease.

“It was an emotional experience for myself and the people I was traveling with, knowing that we could still be in that situation,” Daniel said. “I felt very blessed to have experienced that, knowing that not every child gets adopted.”

Growing up with a rare disease made life’s transitions from youth to adulthood especially challenging for Daniel in his education through middle school and high school, and in finding a career that allowed him to balance his condition while maintaining a job. He often had to advocate for himself in both school and work until just three years ago, when he found an ally in the TS Alliance: An organization that provides support for people living with TSC by funding research programs and providing various resources to the community.

One of the first events Daniel attended was the TSC Community Picnic near Seattle, Washington. There, he met with other families living with TSC and was introduced to regional leadership from the TS Alliance. “It was an empowering and uplifting experience,” Daniel said.

Since then, he has traveled far and wide as an advocate for TSC, attending events and raising funds in the U.S. and around the world. He is now the Auxiliary Adult Regional Coordinator West for the TS Alliance, where he supports regional events that advance the organization’s commitment to the TSC community. He is also a member of the LGTBQ community, and is engaged in finding fellow rare disease advocates within the community.

Few people can have the same perspective on both rare disease and adoption like Daniel. He understands the value and challenges of adopting a child with a rare disease and for him it comes down to this: “You’re bringing home a person that needs a home. There’s always going to be someone waiting for a family.”