Lilah as a baby.
When life gives you lemons, some people make lemonade. For Kimber and her daughter, Lilah, that simple saying has come to define their journey with MPS VI—and the joy, strength, and community they’ve found along the way.
When Lilah was born, Kimber remembers a beautiful baby with dark curls and a big personality. But from her earliest days, she knew something wasn’t quite right. “She had a painful cry,” Kimber recalls. “Her joints would pop, and we were constantly in and out of appointments.”
After months of tests, referrals, and uncertainty, Lilah received her diagnosis: mucopolysaccharidosis type VI, or MPS VI, a rare genetic disorder. The news was devastating—but it also brought clarity and, in some ways, relief.
“We finally had a name for what was happening,” Kimber said. “And we finally felt like we could do something about it.”
Lilah began treatment when she was just 15 months old. This offered new possibilities, but also came with challenges for the family, as well as the local medical team which was inexperienced at managing MPS VI. Fortunately, Kimber found a medical team in Minnesota with more experience that helped her feel reassured and supported.
“They told us that Lilah’s condition was manageable,” she said. “That gave us confidence to move forward.”
Since then, Kimber and Lilah have made frequent trips to Minnesota for treatment and follow-up appointments. Each visit has strengthened their sense of resilience—and their appreciation for the community that surrounds them.
In 2019, Kimber & Lilah heard that the National MPS Society was hosting its annual conference at Disney World. Lilah was eager to attend, but Kimber–a single mom with three children–wasn’t sure how they would afford it.
“I know,” Lilah told her. “We could have a lemonade stand!”
Lilah with her mom, Kimber, at Walt Disney World.
Thus, Lilah’s Lemonade was born—freshly squeezed and full of heart.
What started as a small stand in their neighborhood soon became something much bigger. Their community showed up, glass by glass, helping raise enough to fund their trip–and then, it grew into something more.
Every summer, Lilah’s Lemonade Stand has returned for the season, and the family has turned it into an annual fundraiser benefiting the National MPS Society–giving back so that other families like theirs have the opportunity to attend National MPS Society events, and get connected to the larger MPS community.
Since 2019, Lilah’s Lemonade Stand has raised more than $25,000 for the National MPS Society.
“It’s incredible what one little idea can do,” Kimber said. “Lilah just wanted to help—and she did. She continues to remind us that good things can come from hard times.”
Today, Lilah is known for her humor, her optimism, and her unshakable positivity. She loves graphic novels, going for rides on her balance bike, and swinging at the park. Her favorite meal? Steak quesadillas with a Baja Blast lemonade, of course.
“She always looks on the bright side,” Kimber shared with a smile. “She’s the kind of kid who finds the silver lining in everything.”
Lilah also treasures time with her family, including her 9-year-old sister, 19-year-old brother, and new baby stepbrother. Her friendships with her cousins, as well as Savannah, another young girl with MPS VI in Texas, keep her connected and laughing—no matter what challenges she faces.
Lilah in the summer of 2025.
“We’re just really grateful for the support in the community. Bringing everybody together is really important. This would be very, very isolating with how rare this community is,” Kimber reflected. “If we didn’t have resources like BioMarin, the National MPS Society, and NORD… If we didn’t have gatherings and get-togethers where, as parents, we’re allowed to be special needs parents together, and kids like Lilah and Savannah can connect with each other… You just can’t put a value on that.”
For Kimber, the National MPS Society has been a lifeline—offering resources, connecting families, and advocating for progress in research and care. Her advice for new families facing an MPS diagnosis is simple but powerful: “Take one step at a time. Don’t look at the whole mountain—just the step right in front of you. Focus on today.”
That perspective, like Lilah’s lemonade, is both sweet and strong. It’s a reminder that even when life gives you lemons, love, community, and hope can make them into something beautiful.
