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I was born sick, had my first surgery when I was two weeks old and since have had too many surgeries to count. Some of these most recently include having both of my hips and both of my knees replaced.
It took my parents 16 years, 4 misdiagnosis and 54 specialists to find out the name of the mystery disease that has rapidly been eating away at my skeletal and organ systems.
Mucolipodosis is a rare lysosomal storage disease that very few people in the world live with today. It is my mission to raise money for research so that we can find a treatment and a cure! Making a donation is easy and safe- simply click the “Donate Online” button in the upper right to donate. All donations will be applied 100% to ML research!
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The mission of the National MPS Society is to fund research and provide support for families affected by MPS and related diseases.
Please help our family and support the National MPS Society. Every donation will make a difference in the lives of those affected by MPS and related diseases. Please visit www.mpssociety.org for more information.