Meet this month’s community spotlight, Elinor!
Elinor is a 15-year-old who was diagnosed with PKU at birth and began Kuvan therapy at just seven months old. “Living with PKU makes my daily routine look different from others,” Elinor shared.
Over the past five years, she has developed a passion for volleyball and currently plays on both her high school and club teams. “Being an athlete with PKU requires precise planning of formula and food choices, which can be challenging,” she explained. “Thankfully, my metabolic team is incredibly supportive and helps me stay on track.”
Elinor also shared that she has learned a great deal about the connection between sports and PKU by attending NPKUA conferences. “Being constantly on the move as an athlete and traveling with my family is something I enjoy, even if it means counting every last bottle and pill to make sure I have everything I need. Managing PKU can be hard some days, but it’s also made me part of a huge PKU family.”
Since the age of five, Elinor has attended The Painted Turtle Summer Camp, created for children with a variety of medical conditions. She is also part of Camp PHEver in Texas, “where all ‘extended’ PKU families get together for a week of fun, formula mixing and tasting, and lots of memories.”
Currently, Elinor’s PKU journey includes navigating a new medication, Sephience. “I wouldn’t be able to do all these things without the support of my family and my UCLA metabolic team,” Elinor said.
We’re proud to support Elinor along her PKU journey and can’t wait to see all she continues to accomplish.
