Cure MPS1 Project
“We are the Nash family—centered around faith, family, and finding a cure for our daughter, Blayne. At only 4 years old, Blayne has faced more battles than many face in a lifetime, but her strength, joy, and fierce love for family shine through it all. Blayne loves dancing, tee ball, art, and playing with Hank. Every day, she shows us what true courage looks like.”
Blayne’s life changed forever in September 2021, when she was diagnosed with MPS1 Hurler Syndrome at 18 months old. From that moment, our world was turned upside down. What started as a routine check-up ended with the devastating news that Blayne had a rare, life-threatening genetic disorder. We were overwhelmed by fear and sadness, but in the midst of the chaos, we chose to trust in God. We chose to fight for Blayne’s future.
MPS1 Hurler Syndrome is a rare genetic disorder that affects many parts of the body. Without treatment, it can lead to severe disabilities and a shortened life span. However, there is hope through therapies and treatments like enzyme replacement therapy and stem cell transplants.
Just months after her diagnosis, Blayne underwent a life-saving stem cell transplant. On January 17th, 2022, Blayne received her new cells, marking the start of her fight against MPS1. Although the transplant was successful, Blayne’s journey is far from over. She continues to face daily struggles, from weekly enzyme replacement therapy to ongoing surgeries. Every day is a battle, but Blayne’s spirit remains unbroken.
September 2021: MPS1 Hurler Syndrome Diagnosis
January 2022: Stem Cell Transplant
Misconceptions About MPS1
From the outside, Blayne looks like any other joyful 4-year-old. But what you don’t see are the hours spent in therapy, the pain she feels, and the long list of surgeries looming in her future. People often say, ‘She’s fine now, right?’—but the truth is, without a cure, Blayne will always be fighting. There is no cure for MPS1 Hurler Syndrome yet, and without one, Blayne’s future remains uncertain.
The Kennedy Ladd Foundation is on a mission to fund research and find a cure for MPS1 Hurler Syndrome. Blayne’s story is just one of many, but together, we can make a difference. Our goal, through the Cure MPS1 Project, is to raise funds for medical research, provide better treatment options, and enhance the quality of life for children like Blayne.
How You Can Help
Blayne’s life verse is Romans 5:3-5: ‘We rejoice in our sufferings, knowing that suffering produces endurance, endurance produces character, and character produces hope.’ We believe that with your help, we can move mountains for Blayne and others battling MPS. Here’s how you can support her fight:
Donate: Every dollar brings us one step closer to a cure for kids like Blayne.
Share: Spread Blayne’s story and raise awareness about MPS1 Hurler Syndrome.
Pray: Join us in praying for a cure and for strength as we continue this journey.
