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 back in 1994, we learned of their future limitations and of symptoms that would make their lives difficult. However, grief turned into admiration as we observed how our beautiful children responded to these challenges and further into action as all three participated in trials and life-changing treatments that would not only help themselves, but all children with MPS.
In January of 2008, our hearts were broken when our beautiful son Spencer passed away at the age of eighteen. His biggest fans, Maddie and Laynie, continued his legacy of raising awareness, working for treatments, and bringing joy to the lives of others.
Sixteen years later, our hearts sustained further damage when we lost our precious Maddie in January of 2024. While struggling through some of our darkest days this year, we have drawn closer to God for His strength and help and continue to entrust our lives to Him.
We know we have been given more than we deserve and all we need to improve the lives of future families with MPS and other rare diseases. One of our greatest gifts has been our friends and family, who have loved us in endless ways and have lifted us up on our journey. We are so thankful for each one of you!
MPS I is a rare, genetic lysosomal storage disorder caused by the body’s inability to produce an 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 cause progressive damage throughout the body, including the heart, bones, joints, respiratory system, and central nervous system. There are recent limited treatments, but no cure.
Currently, Laynie receives enzyme replacement therapy once a week in our home through a four-hour IV infusion. Although ERT is not a cure for MPS, it has extended her life by giving her greater strength 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 focused on funding research for cures, providing family support, and increasing awareness of MPS and other rare diseases.
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 enzyme replacement therapies that cross the blood-brain barrier) as well as implementing newborn screening for MPS I in every state. Our children have been involved in this noble cause every step of the way and are much loved trailblazers in the community.
Your words and prayers sustain our family.
With love,
Steve, Amy, and Laynie Holland
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