It's been a whirlwind year since my son was born and diagnosed with cystic fibrosis. Despite the surgeries, hospital stays, and challenges of living with the disease every day, I'm thankful for the people who helped pave the way.
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I am anxiously awaiting the U.S. Food and Drug Administration's approval of Trikafta for children with cystic fibrosis ages 6 to 11. To prepare, I'm doing everything I can to ensure my 11-year-old son can take advantage of the medication as soon as it is approved.
When my husband got COVID-19, we had to set up strict rules and procedures to keep our adult daughter, who has cystic fibrosis, safe.
Emily, Piper and Somer continue their “real talk” about living for each day, reinventing their future and being up for a good challenge.
"Moving up." Those are the words I choose to use instead of using the word "died." To me, "moving up" represents the next stage where we go, in another form, in another life. I don't believe that love ends and I never say goodbye.
Today, my son Eric turns 24. He has his own house. He has a career in finance at Merrill Lynch. He has cystic fibrosis.
I struggled when I learned that in addition to cystic fibrosis, my daughter also had adrenal insufficiency. I felt anger, sadness, and anxiety. But thankfully, with the support of my husband, family, friends, and care team, we learned how to manage her condition and deal with emergencies.
The impact of cystic fibrosis on a parent and child relationship is both unique and everchanging. As I've grown into adulthood, my mother and I have learned new ways of talking about this illness and have seen more clearly how it affected us in the past. Now, more than ever, I'm learning a large part of being cared for is caring for those who have cared for me.
When faced with her daughter's diagnosis, Linda Dolan used Emotional Freeing Techniques to help her deal with the uncertainty of cystic fibrosis.
As the parents of two children with cystic fibrosis, we survived every parent's nightmare -- the loss of a child. Alyssa, our 29-year-old daughter, died in March 2018 after two failed double-lung transplants. We don't question why, because there is no acceptable answer. We just soldier on and fight for our son.