After our story was featured on CNN, we received media request and messages from all over the world. We cannot respond to everyone individual, so we created the following guide for media organizations and interested parties.
What did Julianna have?
Julianna had a severe form of CMT (Charcot-Marie-Tooth disease).
What is CMT?
CMT is a hereditary neuropathy. Though considered a “rare disease,” it affects 1 in 2500 individuals worldwide. Learn more about CMT here.
For Michelle’s take on CMT, and Julianna’s form of CMT, look here.
Why was Julianna’s CMT so bad?
We don’t know yet. Her father, Steve, has a mild form and has almost no symptoms of the disease.
CMT researchers around the world have been trying for years to find out what gene mutation(s) are responsible for Julianna’s disease. Recently, the CMTA donated $6000 for next-generation gene testing. We are hopeful that we will have the answer soon.
Why did Julianna have to wear a mask all the time?
CMT weakened Julianna’s respiratory muscles. Julianna used BiPAP, which helps push air into her lungs. She started using this at age two and became dependent on it at age four. Read more about it here.
How did the heaven conversations start?
See my first blog entry, please.
Did you really think that Julianna is capable of making decisions about heaven vs. the hospital?
When our story went viral, this question was debated on almost every media site. Our story is long and complex. It can’t be summarized in a sound byte.
Julianna was wise beyond her years, but she was a child. Steve and I made the medical decisions, and we let Julianna guide us. We listened to her words and observed her reactions. We knew her history and what was important to her — and us. And, of course, these decisions were made after consulting with Julianna’s medical team. Everything we did was with their approval.
Why are you sharing your story?
There are a few different reasons:
- We want to raise awareness and money for the CMTA, a 501 (c)(3 ) federally recognized charity that funds CMT research.
- We want to show what families go through when their child has a terminal illness. The choices are agonizing, but we must be informed and make the best decisions we can.
- Julianna was too good not to share. She taught us about love, courage and what it means to truly live.
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