Love for Lewyn

Welcome.

 

Lewyn is a happy, funny 7 year old boy.  He was diagnosed with adrenoleukodystrophy (ALD), a rare genetic disorder, on March 31, 2022. ALD is an X-linked disorder that affects the brain. Children with ALD typically develop normally for the first several years of life but experience sudden and rapid cognitive decline starting about the age of 6. This manifests, over time, in complete loss of vision, hearing, speech and motor skills. There is no cure for ALD. In cases of early diagnosis, bone marrow transplant and, increasingly, gene therapy can slow or halt but not reverse the disease. Lewyn, sadly, is not a candidate for these treatments because of how advanced the disease is. That said, his parents are working with a dedicated team of doctors from across the country to provide him with the best possible care moving forward.

We appreciate your support in raising funds to help Lewyn and his parents, Erin and Rada Blasko, with providing the best care, medications, and services available. Their journey will be difficult and our goal is to assist in any way possible.  We appreciate all the love, prayers, and support.

 

The Comprehensive Adrenoleukodystrophy Center at the University of Minnesota is among the foremost ALD center’s in the world, dedicated to the diagnosis and treatment of ALD and to ALD research. Lewyn has been invited to meet with doctors at this Center. To learn more about ALD, visit online at https://med.umn.edu/pediatrics/programs-and-centers/leukodystrophy-center/adrenoleukodystrophy-ald.