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 does Julianna have?
Julianna has 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 is 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 does Julianna have to wear a mask all the time?
CMT has weakened Julianna’s respiratory muscles. Julianna uses BiPAP, which helps push air into her lungs. She has been using this since she was two years old, but has needed more and more time on it as she has gotten weaker. Read more about it here.
How did the heaven conversations start?
See my first blog entry, please.
Do 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 is wise beyond her years, but she is a child. Steve and I make the medical decisions, and we let Julianna guide us. We listen to her words and observe her reactions. We know her history and what is important to her — and us. And, of course, these decisions are made after consulting with Julianna’s medical team. Everything we have done has been 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 can seem agonizing, but we have to be informed and make the best decisions we can.
- Julianna is too good not to share. She teaches us about love, courage and what it means to truly live.
Contact information:
@julianna.yuri
Michelle Moon
3307 Evergreen Way #707
PMB 157
Washougal, WA 98671
For media inquiries:
Please contact Bob Clary ([email protected]). Bob works in the marketing communications world, and he also has CMT. He has generously offered his time to help our family with these requests.
Thank you for your understanding, and for your interest in our story.
