"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with...
Episode 155 | Travis’ Story – A daughter with Cystic Fibrosis
Podcast Show Notes
Travis shares how they discovered his daughter’s cystic fibrosis diagnosis at age 4. Just months earlier, Travis learned his half sister was diagnosed with Cystic Fibrosis. He shares how the journey impacted his life on a professional and personal level creating the foundation, Piper’s Angels to help support families dealing with a Cystic Fibrosis diagnosis.
[3:50] Introductions
[6:43] Showing signs of respiratory issues
[8:11] Chest X-Ray to determine the cause of the Cystic Fibrosis
[8:37] Adamant state of denial
[9:16] The earth-shattering news of the Cystic Fibrosis diagnosis
[11:06] Oldest half sister was diagnosed with Cystic Fibrosis months before
[13:00] Prescreening for Cystic Fibrosis
[14:22] Gene expression can create varied symptoms
[15:32] Travis and sister have mild Cystic Fibrosis system
[18:25 Learning how to advocate started with becoming apart of the CF community
[18:44] Piper became very sick around age 8
[20:36] Roller coaster of having a child with a chronic illness
[22:44] Creation of Piper’s Angels
[25:14] Being vulnerable
[27:00] Adversity is the starting line for courage
[28:50] Growth is the hearts expansion
[30:40] Piper’s Angels
[33:10] Scholarships available for Saltwater Camps for CF patients
[34:10] Mindfulness activities
[36:15] Paddling contest annually
Connect with Travis
Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.
Parents, download our free parent starter kit.
When you download our starter kit, you’ll learn how to:
- Give medicine to your child without it becoming a wrestling match
- Prepare your child (and yourself) for a shot so they can feel less anxious
- Create and use a coping plan for any medical appointment or procedure
The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.
Child life specialists, get affordable PDUs on-demand here.
Shop for your CLOC gear here.
Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.
You Might Also Like…
235: A Mother’s Journey of Love, Loss, and Resilience- Kathy’s Story
“If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child.” In this heartfelt episode,...
234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure
Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge. “You want to make sure that you are ready to be able to prepare not only yourself but your kiddo.” - Emily Martinec, CCLS In this...