Our three children, Spencer, Maddie, and Laynie, were diagnosed with mucopolysaccharidosis type I (MPS I) at ages four, three, and one. When they were diagnosed, we were told of their limitations, of symptoms that would make their lives difficult. Grief turned into action as all three participated in trials and life-changing treatment opportunities.
In January of 2008, our son Spencer passed away at the age of eighteen. His biggest fans, Maddie and Laynie, continue his legacy of raising awareness, working for treatments, and bringing joy to the lives of others. Maddie loves art, creating things, and sharing stories. Laynie enjoys traveling, fashion, and her huge network of family and friends. Maddie and Laynie share a strong bond, fully understanding what the other is going through and walking together in their MPS journeys.
MPS I is a rare, genetic lysosomal storage disorder caused by the body’s inability to produce a specific enzyme. The body uses this enzyme to break down and recycle cell materials. In Spencer, Maddie, and Laynie, the insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system, and central nervous system. There is no cure.
Currently, Maddie and Laynie receive enzyme replacement therapy once a week in our home through a lengthy IV infusion. Although ERT is not a cure for MPS, it has positively impacted their lives by giving them greater strength and stamina.
Steve and Amy have served on the Board of Directors for the National MPS Society for almost thirty years, helping grow the organization to one centered around funding research, providing family support, and growing legislative advocacy efforts.
Our greatest hope is that no other family has to endure life without a cure for MPS. We are working to fund research to bring about new, improved treatments for MPS I, including gene therapy, cell therapy, and second-generation enzyme replacement therapies that cross the blood-brain barrier. Our children have been involved in the process every step of the way and remain trailblazers in the community.
Your words and prayers sustain our family.
With love,
Steve, Amy, Maddie, and Laynie Holland
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