Experiences

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

“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?’”

“It takes a village to raise a kid, and in my experience with rare disease, it’s actually taken several villages.”

“I’m incredibly hopeful for what the future holds and excited to brag about all of Mason’s future accomplishments.”

“While Colin continues to put in the work to be the best he can be, our community continues to fundraise and push research in a forward direction.”

“Nobody has the same story, but I hope siblings of those with rare conditions will take comfort in knowing that they are not alone.”

“We don’t know where this new path is going to take us, but we will be with him every step of the way.”

“It’s a very complicated disease, and it can be frustrating, but I couldn’t ask for a child to deal with this any better.”

“As parents, our goal was to make sure Braylee knew about her body and understood that everyone is different.”

“He has his own way of communicating with people, including his own language, which his family and very close friends have learned”

“Anyone who meets our youngest daughter Kylie always comments on her beautiful smile and playful nature.”