I-Cell Disease

One in a million. That is exactly what Mercedes and her family discovered that their youngest set of twin boys were when they were born. Her sons Dorian and Wynn were born with Mucolipidosis II (also referred to as i-cell disease). Only 1-2 infants in every one million births are diagnosed with the progressive terminal illness. Mercedes and her family have given much time and resources in coordinating fundraisers and raising awareness The National MPS Society, the key organization that provides assistance and research grants for families living with terminally ill children.

In addition to steadily raising funds for biomedical research and family support programs, Mercedes has become a nationally recognized legislative advocate to provide rare disease families greater access to speciality care and disease management resources. She works closely with the Everylife Foundation and the Rare Disease Legislative Advocates. 

To learn more about the National MPS Society click here.

To learn more about the Everylife Foundation and RDLA click here 

Take a moment to learn more about Mercedes’ family journey and the plight of i-cell families worldwide, by watching the video below.