Growing up with Cystic Fibrosis, I always worried about how long I’d have on this earth. Born with a childhood disease, I had a median life expectancy of 16 years. I lost my sister Wendy to this disease before I was even born as she only lived 16 days.
When I see young CF warriors succumb to this disease we share because their little bodies, like my sister’s, could no longer fight, I feel guilty for having lived so long. I know I shouldn’t but I do. Just last week I learned of the loss of Kira and Zach. Neither had even reached puberty before CF stole their lives. I’d like to tell you this doesn’t happen very often but unfortunately, with regards to CF, this happens more times than I’d like to admit. Still, with improved newborn screening and breakthrough treatments, people with CF are living longer. Unfortunately, a lot of these breakthrough drugs are not available for children under twelve and there’s no telling how strong a person’s body will be at such a young age.
Whether I know the family or not, any child who loses his or her life to CF will forever have a place in my heart, and will continue driving me to advocate for those whose bodies are still strong enough to fight.
Notice that I said “bodies.” It’s not the child or their family who stopped fighting. They are all CF warriors. It’s just that our bodies control how long we live when it comes to CF or anything else.
We must find a cure for 100% of the CF community. I refuse to be satisfied with a drug only improving the symptoms of 90% of the CF population. We need to improve the symptoms of everyone, not just a percentage, and eventually find a cure for this disease. CF Warriors are literally in a fight for our lives.
I’ve included a few links for those of you who may have lost a child to CF, or for any other illness or reason. I can’t imagine this could ease anyone’s pain completely but am hopeful you find these resources helpful in managing day-to-day. My heart is with you.
Coping With Grief
- The Compassionate Friends: A national nonprofit with chapters across the country. The organization offers help and support to parents and families who have lost a child.
- The COPE Foundation: Connecting Our Paths Eternally is a national nonprofit foundation dedicated to helping parents and families cope with the loss of a child.
- Healing Hearts for Bereaved Parents: A group that provides support and services to bereaved parents.
- HelpGuide: A nonprofit Website offering comprehensive resources for dealing with grief and other serious life challenges.
Live your dreams and love your life…and hug those close to you just a little bit more every day.
Andy