When we made Tori’s story public we expected to hear from people genuinely trying to help save her life. We have greatly appreciated the time and energy people have put into trying to help her, and us!

However, we have also received messages and comments from people who clearly haven’t researched Krabbe and are merely trying to push their own beliefs and platforms on us. There is a huge difference between the two, and it is always obvious which camp the person commenting is in.

Below is an email we received yesterday from a woman who claims to be a health and wellness coach on her Facebook page. She has stated in the past that she believes that things like ranch dressing cause cancer, to give you an idea of her beliefs. She is part of a Facebook community that I am also involved in, and that is how she heard about Tori. She doesn’t like to be confronted and always deletes comments from people questioning her “facts” with actual research. She strongly believes what she preaches but is apparently very insecure when questioned.

This is an example of what NOT to say to a family that has a dying child. I included my responses as well to paint the entire picture.

NOTE: this post is not to stir up a debate about vaccines. Please do not comment with your opinion about them as it is completely irrelevant to Krabbe and it isn’t the point of this post at all. 🙂

Hi Lesa,

I’ve been thinking of you and your family. How is Tori doing? And yourself?

I wanted to get in touch with you as I find out the resource I had for you never got in touch with you. I am sorry.

When I first read of Tori’s story I immediately sensed why she had the reaction she did. To confirm, she had these problems right after vaccinations, correct?

The toxins that are in the vaccines include aborted fetuses, heavy metals, and a host of other things that God never intended our bodies to have. Vaccine injury is very real and to date the US gov has paid out over $3 Billion to families.

Here are some resources to get you started in the healing process of Tori and your family:

I highly recommend that you start a vaccine detox with Tori to help her body get rid of the toxins. 
(Links omitted)

Please let me know what questions you have and how I can support you in Tori’s healing and in discovering the truth. 

It is apparent that this woman has not actually been following Tori’s story or diagnosis at all. So, the fact that she wrote to us with those suggestions was not helpful or welcomed. But, I decided to still answer with grace.

I kindly responded to her email:

Thank you for sharing your thoughts and resources! 

Unfortunately, Tori has Krabbe Leukodystrophy – a genetic disease. Brennan and I both carry a recessive gene for the disease (we now know) and unfortunately Tori inherited both recessive genes. 

Krabbe destroys the central and peripheral nervous systems because the body doesn’t produce the GALC enzyme. 

I wish it were as simple as a vaccine. We are pro-vaccinations and believe they do more good than harm. Her shots had nothing to do with her genetic makeup, so without a miraculous healing from God Himself, she isn’t going to live past the age of 2 years. 

For more information on this terrible disease you can see http://www.huntershope.orgor http://judsonslegacy.org/krabbe-disease 

Thank you for your concern! If you want to keep up with Tori, I have been blogging extensively about it at https://thebrackbills.wordpress.com and her Facebook page is http://www.facebook.com/prayingforTori

Her only response?

Even though they contain aborted babies?

 I thought for a long while about how to reply because I wanted to be kind:

With all due respect, I have never seen a legitimate source write about vaccines containing aborted fetuses. And, if it is true, it’s not like they aborted the babies just to make the vaccines. If anything, that aborted fetus is saving lives by being in that vaccine, which takes a horrible act and brings good from it in a way…if it is even true.

But, that isn’t what this is all about. Our baby is dying (and suffering in the process) and right now I honestly couldn’t care less about the vaccine debate. What I care about is getting legislation passed in each state to ensure that every newborn is tested at birth for Krabbe so that no more babies lose their lives to this horrific disease.

If the issue had been left there, I wouldn’t have minded. However, she posted the following status on her PUBLIC page not long after this conversation happened:

I was stunned when I saw this. The timing of it made it impossible to believe that it could be about anything – or anyone – else. I commented on her status asking if she was writing in reference to me, and she promptly deleted my comment (and the ones from other friends of mine who saw the post) and then deleted the post and blocked all of us.

The whole situation made me laugh, honestly. Yes, I was annoyed when I saw her status about us. How anyone could say something like that, claiming that we aren’t doing everything we can to save our child’s life, is unbelievable. But, more than anything, I feel sorry for this woman. She is so misguided and her Facebook page is filled with ridiculous health claims. She doesn’t appear to have any credentials or health education, yet she is offering health claims and advice to the public as a business. Sigh.

Krabbe is genetic. Nothing we did caused it. Vaccines sure didn’t. In fact, vaccines are highly recommended for Krabbe babies.

Moral of the story: Don’t say that parents of a dying child are not trying to save their child’s life. Don’t offer advice without researching the disease. It isn’t helpful, it hurts feelings, and it wastes precious time.