Experiences

“Wilson disease affects many parts of my daily life because you literally have no idea what you are going to wake up to the next morning.”

“This disorder is always two steps ahead of us so we take it one day at a time.”

“I have Duchenne, my muscles are different, but I am a lot more than my Duchenne.”

“We refused to accept what we were being told, and I’m glad we did.”

“As I got older, I started learning how to listen to my body to know when I needed something.”

“In the beginning, we focused on what he was going to lose. Once we saw what he provided to those around him, Duchenne became just a part of who he is rather than his whole identity.”

“We may be kilometers apart, but I’m walking the same path as you.”

“For as long as I can remember, what motivated me to become an advocate was knowing that through advocacy and through helping others, I would be honoring my dad. It also helped me cope with my loss.”

“After answering questions like, ‘Tell me something that you’re proud of. What are you enjoying about your child? What makes them laugh?’ parents were saying, ‘I am now seeing my child through a different lens. I am seeing how my child is developing. Not only in the realms of speech and language, but of character and personality.’”

“To my other peers with a rare disease – you’re definitely not alone. There’s always someone that understands and is going through what you’re going through. There’s always someone you can talk to. Don’t keep it bottled up.”

“We are parents, not doctors, but we fight for our children.”

“It’s okay to say, ‘I’m having a really hard time,’ but within that to say, ‘Are there little things I could do to start to make it better?’”