A Message From a Wesway Family

Dear Friend of Wesway,

I'm writing to share my story - one of resilience, dedication, and the kind of support that only an organization like Wesway can provide.

My son Peter Justin was born in 1994. By the time he was nine months old, it was clear something was wrong. He wasn't meeting his milestones, and his skin was always red, as if sunburnt. We did our best to manage, avoiding the sun, using protective clothing, walking only in early mornings or late evenings. But despite every precaution, both his skin and eyes became damaged by the light.

In 1996, PJ was diagnosed with Xeroderma Pigmentosum, Group D, a rare genetic condition that causes severe sensitivity to ultraviolet light and progressive neurological decline. Not long after, my daughter Avery was diagnosed with the same condition.

Navigating the overwhelming demands of rare disease management, life became structured around safety. Every part of the day required planning. We covered windows. We stayed inside. We lived carefully.

It was during this time that Wesway became part of my life. They didn't just offer support, they ensured our matched-in workers saw me, understood my situation, and stood with me. Because of Wesway, I've been able to care for my children at home, where they feel safe, where they belong. I went through breast cancer in 2009 and major surgery in 2010. Wesway's support allowed me to continue caring for my children even in the middle of my own health battles.

Today, Peter Justin is 31. Avery is not far behind. Their needs continue to grow, and so does my caregiving commitment. The Respite Workers who have come into our lives over the years have done more than help, they've become extended family. They've shared our routines, our challenges, our laughter, and our quiet victories.

I often remind workers to take care of themselves, because families like mine depend on them. I hope every family that needs Wesway can experience what I have: consistency, trust, and real partnership. There has never been a moment I've felt uneasy opening my door to a Wesway worker. That kind of peace is rare and so deeply appreciated.

Please consider donating to Wesway. Your support helps families like mine continue caring for our loved ones with dignity, safety, and love.

With sincere gratitude,                   

Earla Navratil