Each day, we at Global Genes, read the stories of parents who are raising children with rare and fatal diseases. They watch their children go through intense suffering, hospitalizations, and pain that most adults won’t ever have to endure. They make choices about whether or not to enter their children into clinical trials or allow them to take black box medications.

In recent news stories, a family, the Snows, came out about their decision to allow their five-year-old daughter, Julianna, with Charcot-Marie –Tooth Syndrome to choose palliative care at home instead of prolonged treatment at the hospital.

To some the idea of letting their child select their own brand of toothpaste is a difficult decision, let alone their life-or-death medical decisions.

You’re going to read a lot of stories and a lot of comments about this family, but we want to know what you—as parents of children with rare disease—would (or maybe even eventually will) do in this position? Comment below and we’ll feature some of your responses in a follow up piece.

To read more about Julianna’s story check out the following links:

Fox News

CNN

17 thoughts on “Family Allows 5-Year-Old with Rare Disease to Make Life or Death Decision: Would You?”

  1. Sarah Hobbs says:

    She is five years old. Considering most kids with this child’s disease die by the age of two, I think her parents have done amazing work as parents. As a patient of a non-life threatening rare disease, I think how research for treatments and cures for rare diseases needs to happen. No parent should be into the place that this family has. NO ONE!

  2. Jenni Taylor Howard says:

    CMT is not life threatening, what website did you get this information from? It’s often diagnosed into late adult hood. Not life threatening at all.

  3. Marie Naughton says:

    Totally I have 3 kids with cmt and there father untrue information and people will take that as fact and not look into it ! Cmt.org

  4. Marie Naughton says:

    I would love to know where u got your information from most people don’t die from cmt I have 3 kids under 7 with it and there not dead … And will not die from it go educate yourself on cmt.org she has a unknown form of it I would hate for people to read your comment and thing cmt is a disease u die from.coz it not every 1 in 2500 people all over world have cmt !

  5. Marie Naughton says:

    I want to let ever one know that cmt is a disease that most of the time is inherited from either mother or father and passed down with a 1 in 2 chance or 50/50 of each child having it. In 99.99% for cases you live a full life there all different sub types and people r each effected differently even with the same sub type! This story has hit the headlines all over the world yesterday although very sad and my heart goes out to this family.. It has put a light on cmt I am not sure weather a good one or bad cmt doesn’t kill most people there is no cure that true go educate yourself on cmt.org and don’t that what u read as fact! I am mother for 3 kids with cmt !

  6. Sarah Hobbs says:

    there a number of degrees of CMT, and I know not everyone dies from it. The form this child has is the worst, and yes most children die at age two from the form this child has . Oh, and where did I get my information. This article, and as well following her mother’s blog.

  7. Sarah Hobbs says:

    your link does not work.

  8. Marie Naughton says:

    http://cmt.org.uk/
    you cant say that most children die at the age of two when ur her sub type is unknown my friend google cmt have a read and get some information for your self.

  9. Sarah Hobbs says:

    I googled the disease and it took me to http://www.cmtfoundation.org , and their website stated that while most children will have mild forms of the disease their will be some that will have life threatening breathing problems like the little girl in this article.

  10. Sarah Hobbs says:

    cmtfoundation.org states that while most kids will have mild forms some will have life threatening breathing problems like the child in this article.

  11. Sarah Hobbs says:

    Her subtype is not unknown, it is not the most common form. I went to the cmtfoundation.org site, and right on their main page they state there are forms of cmt that cause life threatening breathing problems. I am grateful your kids do not have it, but to deny it does a great disservice to people like the family mentioned in this article.

  12. Sarah Hobbs says:

    You keep posting a link that does not work. I encourage people to check out http://www.cmtfoundation.org. On their website they do state most forms of cmt are not fatal, but some do cause life threatening breathing problems like what the child in this article is facing.

  13. Sarah Hobbs says:

    I did take your advice and went to cmtfoundation.org. They state CMT can be diagnosed at any age, and yes it is often diagnosed in late adulthood. It is also stated that while the disease is often not fatal, there is a subset that will have life threatening breathing problems like this child in the article, but it is not a unknown subset, just a rare one. I noticed you posted a UK website. Could it be that there differences in the disease depending on where you live? Here in the United States there 150,000 people diagnosed with CMT, which under US definition makes it a rare disease. I respect this can be different in the UK. I have been following the story of this child closely, as I live in the same state as the family in the article does. I went to the cmtfoundation site after I click on cmt.org and it kept coming up as a broken link. So, no I am not talking off the top of my head, just getting different information.

  14. Marie Naughton says:

    I am from Ireland and cmt is the same all over world although people have different subtypes! Cmt mostly doesn’t kill u 99.99% of people live till old age, her subtype is unknown or not documented yet! My kids have cmt 1a a Common form of it but each person even with the same subtype mite be affected differently .. My kids r young but the affects r different for each of them and I am goin by what I have read and researched in the last 2 years and all the doctors i have meet each week and of course all the cmters all over the world I have spoken with !

  15. Marie Naughton says:

    Its a rare disease all over the world as but 1 in 2500 people have cmt and most people go undiagnosed if cmt has little affect on them and doctors known little or nothing about cmt!

  16. Marie Naughton says:

    This is from the main cmt page! Have a read thanks!

  17. Sarah Hobbs says:

    ok, so the answer to my question is yes. We are getting a bit of conflicting information based on the different web sites we are going to. I finally did find the link you were posting. It really does down play the risk of breathing problems, compared to the site I have been reading, which says it is rare, but it does happen, and that while rare it is not a unknown subtype. I agree that the most that can be done is treat the symptoms as the come up. Someone I know has a son that has to wear braces on his feet due to drop foot. I think the point Global Genes may be trying to make by posting this story is the need to fund research into finding a cure for the disease, which here in the United States does not really seem to be happening for this and other, what we call here rare and orphan diseases.

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