CMT is a hereditary neuropathy, meaning that the nerves don’t work well because of a genetic mutation. To date, over one hundred gene mutations have been identified as causing the CMT.
Until last year, we did not know the gene mutation that caused Julianna’s CMT. At the time, she didn’t match the eighty or so mutations that were known then. She had “CMT, type unknown.” Articulate and honest, Julianna called it “stupid CMT.”
Now we know that it was caused by a mutation in the ITPR3 gene, and “stupid CMT” has a new name: CMT1J. Researchers have found over thirty people so far who have CMT1J. They live all around the world, and the severity if their disease is, likewise, all over the map.
When I found out that the killer of my daughter had a name, something shifted. After so many years of thinking that we were the only ones, it feels strange but comforting to know that there are others. There are lots of other emotions too, ones I’m still working through.
One of the hardest is the feeling that I have to do something about it. This is what a warrior mother would do, isn’t it? I need to make people care, throw galas, get grants, raise millions of collars and get a CURE for the disease that killed my daughter. Triumph over tragedy, heroics following heartbreak. It would make a great story.
Here’s the truth:
I don’t know if we can do it, and it means so much that I feel frozen sometimes.
I miss her, every day, in the deepest part of me. Sometimes it feels like it only gets harder.
I have to try. I have to at least try.
Earlier this year, another family and I started the 1J Foundation. Our goals are to find the 1J community (affected families, researchers, supporters) and fund treatment. I added Julianna’s biography today.
Thanks for reading.
PS, if you like chocolate and want to help the 1J Foundation, please visit our Sees fundraising page — good until 12/1/23.
Julianna Yuri 
I was always interested in the zen sects that broke away from religion. Of note, one of them asked people often- “what would you do if everyone you know dies- who would you be?” Well, it appears you sort of know, because the weight of the one loss is equal to the weight of all lost. Some get to a point where they can just turn off emotions at times (during the worst days). Some have to remind themselves to not feel sorry for themself. And so forth, and so on. I deeply despise psy quacks who thing handing out brain altering meds is the way to solve things. That is not science, as many in the field even come forth and make youtube videos and papers to admit. Of course, everyone has to figure out a way to live every day after a profound loss. One has no choice. Its okay that it feels worse sometimes, no emotion is wrong. For what its worth, I always figured a few things. First, how would the person want you to react? If you were gone you would want them to be strong, right? How would they want you to be strong every day? Next, living life to honor the fallen is a main idea. To carry on and make them proud. Next, there is the bad. The bad is when you get a strange thought of guilt, of intense despair, of anything. Such thoughts hit you from every angle possible- what if this or i should have done that. That type of thought, the bad- it attacks you when you least expect it, and it hits hard. I learned to identify it as the bad…and say…you do not win today. To separate that bad thought or feeling- to deny it a place to live. Oah, it is there, but identify it as the bad, and REFUSE to let it break your spirit or destroy your perspective. Anyways, all of that is my humble unsolicited input in how to deal with horrid grief. You are no dummy, that is for darn sure. You know all of that and more. I wrote it anyway in the hopes that you found comfort in some of it. It was nice to read your post, as usual Stay Strong!
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