Visiting the Mol Family in the Netherlands!
By Matt Wilsey
Connection matters so much. One of the most challenging facets of living with a rare genetic disease is the isolation from society and each other. There aren’t a lot of people who have the disease so it ranges from difficult to impossible when it comes to connecting in-person. And it’s so important, because having a rare disease is hard, but feeling like your family is alone with a rare disease? That’s so much harder. NGLY1 patients are scattered all over the globe. Proximity will improve as we find more patients, but this is going to take years. In the interim, oceans in both directions separate many of us.
As a foundation, we make every attempt to visit the patients in their countries or hometowns. The furthest we have traveled is India to see 1 of Grace’s NGLY1 “cousins”. Occasionally a language barrier presents problems, but if that happens, we get a translator. And even without a translator, somehow we are able to communicate. There is an understanding that happens given what rare disease parents have been through.
The key is that every family feels connected to the community. Every family can ask questions about therapeutic development or supplements or therapies that seem to be helping. At the end of the day, NGLY1 parents know more about the disease than the clinicians. We have a Ph.D. in this disease.
Today, the foundation was able to meet one the newest NGLY1 families, the Mols, in the Netherlands. Thank you Michiel and Mirjam for hosting us in your home. We wished we lived closer. We look forward to seeing you soon.
– The Wilseys