Going Viral

We were so blessed to have the amazing Erin Fortney Photography capture the birth of our twins because it has made me feel like I was more involved and actually present in the room after delivery.

One of the photos she posted garnered a great deal of attention, to all of our surprise:

We love the photo and what it represents, but we didn’t expect what happened next. We were amazed to be contacted by so many reporters regarding our story and it went viral.

They were enamored with Brennan’s persistence in doing skin-to-skin in the O.R. (which to us is interesting because it wasn’t a question in our minds that he should have that experience with the boys, as well) and we definitely talked about that, but we also recognized the potential for Krabbe awareness and made sure they focused on Tori and her story, as well as Newborn Screening. THIS is our true passion in life!

Here’s the current list of publications that have written about us:

Babble: https://www.babble.com/parenting/skin-to-skin-dad-twins-photo/

Motherly: https://www.mother.ly/news/viral-pictures-show-dad-doing-skin-to-skin-with-his-twin-babies-for-a-very-good-reason

Love What Matters: http://www.lovewhatmatters.com/six-weeks-later-she-was-handed-a-death-sentence-how-dads-amazing-skin-to-skin-contact-with-twins-helps-heal-family-after-devastating-loss/

Birth Becomes Her: https://www.facebook.com/56901132/posts/10100975465821040/

CafeMom: https://thestir.cafemom.com/parenting_news/212461/dad-skin-to-skin-rainbow-twins

People: https://people.com/human-interest/brennan-brackbill-skin-twin-sons-death-toddler/

Huge thanks to Erin Fortney for this image and for the write-up on Birth Becomes Her that started it all ❤ :

Dad had requested skin-to-skin in the OR from the moment that he stepped foot in the hospital… he must have mentioned it a dozen times.

He + his wife were preparing to welcome twins in to the world after losing their first-born to Krabbe Leukodystrophy at the young age of 20 months.

Staff told him that it would be tough since he would have two babies and needed to be in a scrub suit over his clothes … So he promptly and without question explained that he had a large arm-span that was ready and waiting to hold his two boys and then took his shirt off and zipped up his scrubs announcing, ‘well then.. problem solved!’

This nurse made sure to advocate for him to all 24 other people in the OR that day — and personally made sure that his request was fulfilled.  – Erin Fortney

“She was abnormal from birth, you just didn’t know it.”

These words have stuck in my mind since meeting yesterday with the neurologist who diagnosed Tori.

The sentence was spoken with the same gentleness she used on diagnosis day, and it came after we discussed the impending arrival of the twins.

I remarked that I couldn’t wait to see them achieve milestones that Tori never did, though those moments might be emotional because she never did.

And that’s when she gently said those words: “She was abnormal from birth, you just didn’t know it.”

I told Brennan that evening what she had said we pondered her words. We were new parents, and there are ranges for each milestone, so we weren’t worried until Krabbe had set in and something was clearly wrong.

But, in hindsight, the neurologist is correct.

Tori never had great head control. She never truly laughed a rich, full belly laugh. Tori never slept well. She hated tummy time. She never ate enough (and threw up much of what she did) and was tiny. Tori only rolled over one time at five months old, right before Krabbe overtook her brain.

It makes us wonder what else was abnormal.


As the boys grow, learn, and develop, I know our joy will be even greater as we watch in wonder at their accomplishments and milestones. We will watch in awe as they learn and develop. It will not make us feel sad for Tori, but rather overjoyed for them because they are HEALTHY. They are Krabbe-free. And they are going to LIVE and grow.

And we can’t wait. ❤️

Unexpected Emotions

I (finally) received my first copy of my published book today!

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As I held it in my hands I was overwhelmed by two emotions: joy and heartache. 

How fitting that the quote I chose for the back of the book talks about that very conflict.

I felt such joy at knowing that my hard work had paid off, that Tori’s story was finally being told in more depth than ever before, and that new people will learn about her and about Krabbe. I’m finding such unexpected joy in being able to say I’m an AUTHOR. 

But, then I was filled with sorrow because I never should have had to write this book in the first place. No one should lose their child, especially to a disease like Krabbe. I would do anything to have Tori back, healthy, running around like an almost-four-year-old would be doing. Anything.

I allowed myself to embrace the tears (likely also caused by pregnancy hormones 😉 ) for a few moments and then I reminded myself of what I know to be true: that all is well. And I focused on the joy that she brought to our lives, the knowledge that she is in Heaven and we will be with her soon (but not quite yet, as Jim Kelly likes to say), and on the fact that God is going to continue to use her – and us – to save lives as we fight on for Newborn Screening for Krabbe. 


As of now, my book is sitting at #1,336 overall on Amazon. That sounds far from #1, but it’s far higher than 8,000,000 (the number of books for sale on Amazon). It’s also the #1 new release in the Christian Families category. And we are blown away. While we don’t yet know how this translates into numbers of books sold, we’re humbled at these stats.

Numbers matter because Tori matters, because increased awareness is based on the number of people who know about Krabbe, and because numbers will generate revenue for us to donate to Hunter’s Hope. 

So, if you haven’t picked up a copy (or several), please do. It would mean so much to us.

Here’s the Amazon link!

It’s Not About The Money

Cover_lNow that my book is available for pre-order, it feels slightly weird to promote it. I worked for nearly three years on this project, and yet I am hesitant to post about it.

Most of us are raised to be humble, to not ever come across as self-promoting or a braggart. We’ve somehow received the message that you can’t talk about the things you’ve done. The problem with this is that there’s a difference between arrogant bragging and joyful accomplishment. 

One of my favorite authors, Jon Acuff, has talked about this many times. To paraphrase him, if I don’t share about my book/work, WHO WILL? 

One of the aspects that makes it far easier to share about my book is this: I am making hardly anything off of it. Does that surprise you? Most authors make around 10-20% from the purchases of their books. Brennan and I will make less than $2 per book before taxes, AND we’re donating a portion of that $2 directly to Hunter’s Hope Foundation. 

For us, it’s not about the money – it’s about the mission.

The mission is to make Krabbe known by any means possible, to hopefully increase awareness and multiply the Newborn Screening states (currently only SIX screen), and to provide as much money to Hunter’s Hope Foundation as possible as they advocate for Newborn Screening and support leukodystrophy families.

And, of course, to tell Tori’s story in hopes of encouraging others.

That’s why I wrote this. 

It’s not about the money (though we wouldn’t complain, of course! 😉 ) – it’s about awareness.

So, if you’d like to purchase Even So, Joy you can do so directly through the publisher (for now) or through Amazon.

You may see me posting about this often, and that’s simply because of the algorithms of Facebook and other platforms. Some see all my posts, some see none. By posting often, I hope most will see it at least once!

Please help us spread the word and #MakeKrabbeKnown and leave book reviews on Amazon, Barnes & Noble, GoodReads, etc. once it’s available!

Use the hashtag #EvenSoJoy if you share on social media!

Follow-up to the Previous Post

Our good friend, John Neal – founder of Team Krabbe Strong and advocate for Krabbe awareness and Newborn Screening – gave me permission to post his letter regarding the article I blogged about here. He said this so well and I wanted it to help it have a greater audience by sharing it here.

Dear Andy and Brenda:

My name is John Neal, and I am writing you this email in regards to your article published on WebMD regarding Krabbe Leukodystrophy. I am an advocate for families who have been affected by this horrible disease, working with them and other organizations from around the globe in efforts to raise awareness. Part of that awareness is advocating for universal newborn screening for the disease throughout the United States. In my home state of Pennsylvania, we continue to work with lawmakers to enact a bill that was signed into law two years ago. This is also the case for laws that have passed in Illinois, New Mexico and New Jersey. Ohio has mandatory testing with the option of refusal, while Kentucky, Tennessee, New York and Missouri actively test for the disease. Louisiana’s Governor recently signed a bill to begin testing in the near future. Families in Maine, Maryland, Mississippi, California, Arizona, Iowa, Oregon, Texas, North Carolina have been actively trying to have their states follow suit, just like Cove and Jackson’s families are trying to do in Georgia. And so I ask you: Why would you write an article that would shed such a negative light on the testing procedures and treatments available for Krabbe Disease?

As my blood is boiling while writing this, I will try to do my best to be amicable and respectful to you both. But quite honestly, I’m not sure either of you deserve my respect right now. And I can think of a few affected families who were interviewed for this article, and then misquoted, who are as equally upset with your unprofessionalism and deception.

First, how do either of you justify your content in this article? Seriously?! As if we didn’t have to deal with enough politics to achieve our goal of universal newborn screening, now we have to deal with an article (written by what I thought was a reputable source) that contains obvious bias by it’s publisher? Mr. Miller, what is your ulterior motive with this article? You reside in Georgia with your wife and children, right? So I am assuming it is you that initiated this piece? Or you were asked to? It has politics written all over it. It is so one-sided, with the intent of shoving misinformation down readers throats, so that if/when they see that Cove’s Law didn’t pass it can be justified. No one will forgive lawmakers who want to harm little babies, so why not make it seem like they’re saving them (from this horrible testing and treatment)…right?

Secondly, how dare you take advantage of families who were willing to interview with you and twist their words to make your lopsided article read the way you want it to read? The Garcia family lost their boy, Jackson, to this horrible disease. They grieve every single day. And while they do, they continue to build their boys legacy in hopes of preventing any other children from having to suffer; and their parents too. Cove’s family, who has spearheaded this effort, is living daily knowing that they are on borrowed time with their daughter. And things will only continue to get worse. But rather than sit around and do nothing, they are fighting back with the same hopes as the Garcia’s. You didn’t stop there, though. You continued on to interview a family that received a positive test result and is currently at Duke University undergoing treatment to save their boys life. And once again, you misquoted them and draw a focus on the negative side of things. They don’t need that! They’re fighting for their son’s life, who is doing incredible by the way! They don’t need any unnecessary stress caused by your brainwashing article.

Let me ask you this: Did you try to reach out to Wilson family that has a six year old son who is living a normal life, free from krabbe (after receiving transplant)? Michael was diagnosed because of his older brother, Marshall’s, diagnosis. Marshall has since passed from complications due to the disease, but it cost him his life to save his brothers. Did you reach out to them? How about The Galindo family in California whose daughter Faith just turned 20-months and is walking and talking (post transplant)? And how did they know to test? They lost a child previously to the disease. How about the Webb family in Tennessee whose son Owen is doing great? And he, yet again, is a child who was tested because he lost a sibling he never had the chance to meet. The Mabry Kate Act is named after his sister that passed two years ago’ and act that is responsible for the positive test of a baby boy who is currently being treated and doing amazing (in the states first year of testing). Just like Kentucky, who produced a positive test and the child is receiving treatment and doing incredibly well (first year of testing). NO. The answer is NO! You didn’t interview anyone who is doing well. Instead, you took information that is a decade old, and created an article to read the way that you wanted it to read.

Brenda, I know Andy has children…do you? Let me ask you both a question: Let’s say your children were born in a state that tests for Krabbe. And then let’s say you received a positive result that required further testing. So then you Google the disease, read up on it, and spend endless nights crying not knowing what is going to happen to your child. They go through lumbar punctures and MRI’s to determine a definitive diagnosis. Super uncomfortable for a baby just born, I know. But it is a necessary evil. And then let’s say after all of the testing, it turns out that they didn’t have it. Thank God! My question is, what would you say to a family who lived in a state that didn’t test for the disease? What would you say to the parent that wishes all their child had to endure was an MRI and Lumbar puncture rather than have to watch them deteriorate daily? What would you say to the family that has been told to make funeral arrangements for their six month old instead of first birthday plans? What would you say to the family who live each day knowing they will lose their child before their second birthday?

Let me tell you what you would say: You would say THANK GOD MY STATE TESTS and after further testing it came back negative. Cause I damn sure know you’d rather be the parent with the MRI and Lumbar Puncture rather than the latter of the parents I mentioned. And those other parents, they won’t be crying during one week of testing, they’ll be crying every night for the rest of their lives wondering what could have been if only their child was tested.

Did you reach out to Dr. Kurtzberg? Did you know that she has recently submitted a paper for publication with some updated results, specifically results that show promise of improved testing for the early infantile form of the disease. The form that would directly correlate with newborn screening. OF COURSE YOU DIDN’T!!! That wouldn’t benefit you!

I am sure you did get some information from organizations and people affiliated with organizations who prefer not to test, but rather to focus on improved treatments. And in that case…MONEY TALKS. I get it. But politics should not be making the decision of who lives and who dies without a chance. There are reliable testing methods and treatments currently available, and treatments that are saving lives. These kids are living quality lives. And yet, you chose to unprofessionally publish an article that features all of the negatives. How do you feel now? Do feel good about yourself and your work? Do you know the potential setbacks you can cause with such amateurish work? If you didn’t have the up-to-date facts, then you shouldn’t have written anything at all. But because it hit home, in Georgia, you did like most media and fabricated a story to get it done, rather than wait for the truth. Congratulations.

In ending, I would request that you rescind this article. Delete it. Make it disappear. Then go back to the drawing board, do your homework, and re-write it in a professional matter. Do what is right. Do right by the families you’ve wronged, and do right by the families who suffered long enough and are trying to make a difference. Can testing and treatment be improved? Absolutely! And we work on that equally as much as we do newborn screening. But portraying the current methods available in the negative way you did…that was 100% wrong. Please fix it.

Sincerely,

John Neal

Team Krabbe Strong

Inaccuracy in Reporting about Krabbe

I’ve hesitated to bring any attention to an article which was published this week regarding Krabbe and Newborn Screening because it’s incredibly inaccurate and biased. It has caused quite a stir among us Krabbe families and we’ve been trying to figure out how to respond.

So, while I don’t want to drive traffic to this terrible article, at the same time, I feel that being silent is the worst course of action.

You can read the article here (and it was also published on WebMD here).

The article was written in response to a law making its way through the Georgia state house to allow parents the option to have their children screened for Krabbe. While the authors make an attempt to sound unbiased, it clearly failed and their bias is evident. The title itself is evidence of that.

Not only did they misquote two Krabbe mothers, but they also reported false information in an attempt to show their bias. They gave false data about transplantation, and they also didn’t talk to any families whose children were successfully transplanted years ago. They were also wrong about the oldest known survivor of Krabbe, among many other inaccuracies in the piece.

The authors chose to interview those who had their babies flagged by Newborn Screening who ended up not having Krabbe (false-positives, which is an inaccurate term anyway for Krabbe; had the doctors handled it correctly, they would have said the baby was flagged for further testing, not that they were “positive”) and discussed the “stress” and “trauma” caused by those two weeks of waiting for the news. I’m sorry, but give me a break. LOSING YOUR CHILD when you could have attempted to save their life is traumatizing but the article said NOTHING about that. Waiting for further testing to be completed, if the doctors prepare them correctly, is not as bad as they portray it. This study provides a look at false-positives and how they should be handled.

Just because you are a medical doctor doesn’t mean that you are automatically an expert on Krabbe. It is clear that we as Krabbe families know far more about the disease, the pros and cons of treatment, etc. than these authors do, and we wish they would have consulted us before writing such a frustrating article.

There are SO MANY success stories not mentioned here, so many children alive and thriving today who would have died from Krabbe had they not had a transplant. And they wouldn’t have been able to receive a transplant had it not been for Newborn Screening. Yet, the article barely mentions these children. Convenient.

For an unbiased look at the lessons learned from Newborn Screening for Krabbe, read this article. Talk to the parents who lost a child to Krabbe, and those who were given the option (THANKS TO NEWBORN SCREENING) and chose to transplant their child to give them a chance at life.  Talk to someone who has actual life experience with the disease and don’t rely on articles such as this one. 

Newborn Screening for Krabbe is NOT harmful but is essential and beneficial for all involved. We will continue our fight, no matter what the opponents may say.

(You can also read this post, a letter from our friend John Neal to the authors of the article.)

Update on the Implementation of Hannah’s Law

We have an update on the status of Hannah’s Law (Act 148 of 2014).

Read 2014 Act 148 – PA General Assembly here.

I started making phone calls about three weeks ago to determine when the Newborn Screening Advisory Committee would be meeting so that Brennan, Tori, and I could attend.

I found out that the Committee met on December 17, 2015.

(Remember that we all wrote to the Department of Health in November and not a single person mentioned this to us.)

It took a few more phone calls to find out what was decided (since they did not post an update in the PA Bulletin), but I finally reached the correct person and received the following information:

I spoke with the Director of the Division of Newborn Screening and Genetics.

She informed me that the panel decided to only make screening for Pompe (just one of the genetic conditions in Hannah’s Law) mandatory statewide. Pompe is the only one of the LSDs that is currently on the Recommended Uniform Screening Panel  which is why they added that to the Pennsylvania panel.

It is now up to each hospital whether or not to screen for the other lysosomal storage disorders (LSD) in the law.

“Where you live should not decide whether you live or whether you die.” – U2

I asked her if the hospitals would screen for Krabbe if parents asked for it, and she said no, but that they would refer them to Hunter’s Hope for the supplemental screening kits. This information conflicts with what our research told us – that the hospital would test if you specifically ask – so it is safer to just order the kits since we aren’t sure what is actually happening.

All of this supposedly went into effect on Friday, February 5, 2016.

Here’s the problem: we have confirmed ourselves that several Pennsylvania hospitals are telling people that they are screening for these diseases and we can say with confidence that they are NOT screening. NO hospital in Pennsylvania is actually screening for Krabbe or the other LSDs in Hannah’s Law right now. 


 

Tori, Brennan, and I went to the State Capitol today and met with the staff of two different legislators to discuss this issue and to talk about possibly introducing new legislation to change the way that Newborn Screening is done in Pennsylvania, because it shouldn’t be up to the hospital to choose. Lives are at stake and geography shouldn’t dictate life or death.

Tori had fun lobbying with us : )


 

We cannot say much more at this point, nor do we have any actions for you to take. Things are happening and it’s exciting, we just cannot share the information quite yet. We wanted to provide this small update since so many have asked us lately about Hannah’s Law being implemented.

The legislature will be back in session in March and we hope to have additional updates for you at that time.

It never hurts to write to your representatives and Hunter’s Hope has made that incredibly simple! Go to this link and you can customize a letter they wrote and it will go to the appropriate people.

We feel encouraged by our meetings today and by the potential for great change to happen in Pennsylvania that will save lives. However, we also know that the fight is only beginning.