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one family's decision to choose hope over despair

View the 2017 Newsletter

CF Sucks

It’s a CF sucks day. I just heard updates on two kids Paige’s age battling CF: one is in the hospital for who knows how long, and the other needs a liver transplant but will not be listed because she is too sick to survive the surgery.

Before Paige’s diagnosis, I never thought about dying children. I had lots of compassion if I caught a 2-minute blip about one of them on the nightly news, but I didn’t feel compelled to take action. I focused my time and dollars supporting research endeavors that could one day benefit me; like breast cancer, heart disease, diabetes, and multiple sclerosis.

After Paige’s diagnosis, parents of children with chronic diseases started coming out of the woodwork. They were everywhere! I kept asking myself why I hadn’t noticed them before? Then, I read a quote by Frank DeFord (a father who lost his 8-year old daughter to cystic fibrosis): “I think many of us have convinced ourselves that children don’t die anymore, not in the latter half of the 20th century, not in the United States of America, and certainly not in the suburbs.”

The reason we host our WITH ONE BREATH event each year is because chronic disease hurts. The pain of a failing body callously introduces a child to agony. This war between disease and child catapults the entire family into a state of fear, despair, and hopelessness. Our only hope is to get our message out to the masses and pray they will join us in our fight.

I humbly ask you to look around and notice the children who are fighting for tomorrow. Instead of asking what you can do to help their family, take action without permission. Buy gas cards to cover the trips back and forth to the hospital, offer to babysit their children, bring meals over, donate money to research, send a card offering encouragement, visit them in the hospital, help with yard work, pray for their health...whatever! With your help, we can and will make a difference; one disease at a time.