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

Kindness in Unexpected Places

Brennan and I have used TurboTax for many many years and have been satisfied with their tax filing software. It’s easy, thorough, and efficient. However, they gained us as customers for life today through a simple, meaningful gesture.

Today I began to enter the info that we have received thus far and I got to the part about changes in our lives. I had dreaded the part where I would have to remove Tori as a dependent because things like this are a harsh reminder that she is no longer with us. 

I answered their questions and then clicked on the dependent section. After laughing at the questions about Tori’s income and whether or not she paid for her living expenses, I reported that Tori had passed away last year by checking a simple box.

I never saw this coming: 


Someone put thought into this. Someone said, “You know, these people lost their child. We should be gentle and kind.” It would have been so easy to just ask for the information as one would expect a computer program to do. But TurboTax added a compassionate element and it brought tears to my eyes.


The process was simple and I am still amazed at their compassion. 

Thank you, TurboTax, for caring that our daughter passed away. Your gracious compassion means more than you may know. 

Fleeting Moments

Before Tori was born, many people told us to cherish the early years because they would go quickly, never to return.

After she was diagnosed with Krabbe the moments moved faster and there was nothing we could do to stop the momentum. The days were fleeting, and we wondered each day how many more days we had with our beloved daughter.

As a photographer, it was natural for me to take thousands (more like tens of thousands) of photos of her, every angle and perspective possible, hoping that I could remember everything once she was gone.

But, the problem is that what can’t be captured on film is what I miss the most.

I couldn’t capture how it felt to hold her – something I did for hours each and every day. How it felt to feel her breathing. Her smell. The touch of her soft, smooth skin.

I couldn’t capture her soul, the very thing that makes us who we are.


Miss Tori has been with Jesus in Heaven for over two months now and it is still strange. The impact she had on my life is still being discovered moment by moment, and I continue to be overwhelmed by gratitude more than any other emotion.

I think of her almost every waking minute. I now understand what my Dad has said my entire life – that I am always on his mind. I don’t even try to think about Tori – it just happens.

Yesterday, Brennan and I sat down together and watched many of the pre-Krabbe videos we have of her. Hearing her talk and laugh, watching her move freely, and remembering our precious girl before Krabbe took over her defenseless brain brought joy to our hearts. She had the BEST personality, even before she turned five months old.

And I’m still GRATEFUL. Her memory brings me joy, not pain. Peace, not grief.

The KNOWLEDGE (it’s more than just a “belief” as that word is commonly used today) that we will be reunited with her one day brings such excitement to both of our hearts. It won’t be that long in light of eternity!

Tori’s earthly life was cut short, but this life is really just the beginning for all of us anyway. I heard this song recently and I loved the lyrics (especially knowing that Steven Curtis Chapman has also lost a child and his words reflect his experience):

God’s plan from the start
For this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of
His unfailing Love
And the story has only begun

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
We’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding

We were made to run through fields of forever
Singing songs to our Savior and King
So let us remember this life we’re living
Is just the beginning of the beginning.

  • Steven Curtis Chapman, “Glorious Unfolding”

We’re still doing well. The fourteen months of preparation for her death certainly have helped in the two months without her physically with us.

We’re still surprised by how easy it is to leave the house now and how lightly we can pack, how quiet our home is without the humming of machines, how free we feel due to the lack of schedule that we have now…

We have our moments where missing her is something we feel physically. A great example of this was when I first heard the song, “Eye of the Storm” by Ryan Stevenson and I was caught off guard by this line: “When a sickness takes my child away and there’s nothing I can do, my only hope is to trust in You.” Powerful truth.

Sometimes it comes out of nowhere, other times it comes out of thoughtful remembrance of our adventures with her. We’ve both shed tears in the past two months during those moments.

But, because of God and who He is, we are hopeful above all else and remain joyful. God is doing amazing things in our lives and is still using our little girl to change lives, even after her death.

Tori was an amazing little girl and her legacy lives on. We have MUCH to be thankful for and will continue to focus on those blessings rather than her absence.

Those tens of thousands of photographs continue to make us smile as we remember the incredible life we lived with Tori, and we will continue living life abundantly until we are reunited with her forever. It will be worth the wait.

 

Krabbe and The Gradual Loss of Abilities

(I started this post a month or so ago and saved it as a draft…I feel it is still an informative post so I finished it, though I changed some of the wording to fit our current situation.)

We realized a month ago that we hadn’t heard Tori sneeze in months.

Sneezing. Something we all do without trying.

  
We can’t remember when it last happened, but it definitely hadn’t happened in months.

That was our experience with Krabbe – Tori lost abilities suddenly and we didn’t realize they were gone for quite awhile.

When she went to Heaven, she could no longer smile, laugh, cough, swallow, move, sneeze, yawn, or even breathe well without supplemental oxygen. 

She couldn’t process images quickly (though she could still see). 

She never crawled, walked, or talked (except babbling pre-Krabbe). 

She couldn’t squeeze our hands or grip things.

She couldn’t even cry.

She wasn’t able to express herself any longer, and that broke our hearts.

As the brain continued to deteriorate she lost these abilities mentioned above and there are likely some we still haven’t yet realized that she lost.

Tori didn’t just lose these abilities – she lost her life to Krabbe. 

Krabbe is horrific and watching your baby live through it – and die because of it – is something we wouldn’t wish on anyone. 

Take a moment and write to your state legislators at this link to encourage them to screen for Krabbe at birth: http://www.huntershope.org/site/PageServer?pagename=unbs_takeaction

This is why we continue to fight. Our calling is clear and we won’t stop fighting until every child has a chance at life.

Lessons From David

A dear friend shared an incredible insight three months ago and I started to blog about it then. However, I never finished the post.

Tonight, as I was preparing to go to bed, something reminded me about this and it occurred to me that this message is even more relevant to us today, months later, now that Tori is in Heaven.

She sent me this message in December and it has impacted me greatly tonight:

One of the passages of Scripture I have pondered since Tori was diagnosed was 2 Samuel 12, where David is told that his baby would die. 

My husband preached a few days ago about David begging, pleading, fasting, and praying for the life of his child. And God said no.

This is where we see the David being a man after God’s heart thing in action. David gets up, washes, dresses, eats, and then goes to worship God.

I get so angry about the small things. My trust falters. My fist has shook towards the heavens.

And here is a father, who has lost his child, praising God not in exchange for a miracle. But just because of who He is and is worthy of our praise.

I know you have your moments. But I see this heart of worship being built in you.

After the loss, David was given Solomon. 

The world is still impacted over these two babies.

Here is the scripture passage:

“David begged God to spare the child. He went without food and lay all night on the bare ground. The elders of his household pleaded with him to get up and eat with them, but he refused. 

Then on the seventh day the child died. 

David’s advisers were afraid to tell him. “He wouldn’t listen to reason while the child was ill,” they said. “What drastic thing will he do when we tell him the child is dead?” 

When David saw them whispering, he realized what had happened. “Is the child dead?” he asked. “Yes,” they replied, “he is dead.” 

Then David got up from the ground, washed himself, put on lotions, and changed his clothes. He went to the Tabernacle and worshiped the LORD. 

After that, he returned to the palace and was served food and ate. His advisers were amazed. “We don’t understand you,” they told him. “While the child was still living, you wept and refused to eat. But now that the child is dead, you have stopped your mourning and are eating again.” 

David replied, “I fasted and wept while the child was alive, for I said, ‘Perhaps the LORD will be gracious to me and let the child live.’ But why should I fast when he is dead? Can I bring him back again? I will go to him one day, but he cannot return to me.”  (2 Samuel 12:16-23)

What I hadn’t considered until this friend mentioned it was this: the story didn’t end there. 

After David lost his son, he was blessed with another son – Solomon, the wisest man who ever lived. 

David’s greatest legacy was still to come.

Then David comforted Bathsheba, his wife, and slept with her. She became pregnant and gave birth to a son, and David named him Solomon. 

(2 Samuel 12:24)

Brennan and I discussed yesterday how strange it is that we haven’t felt the deep sorrow (yet?) we imagined that we would after losing Tori. 

We realize that grief is a process, but we truly believe that we grieved deeply over the last fourteen months while we had the knowledge that she would leave us far too soon. 

Her final breath brought us closure. It brought us peace.

Tonight I realized that – without even trying to do so – like David, we have risen from our knees and are praising Him for all He has done.  

This hasn’t been intentional or a conscious action (and we certainly aren’t spiritual superheroes or anything like that) – we are simply overcome by His undeniable presence and the incredible workings of His hands to orchestrate Tori’s miraculous death. We can’t help but praise Him as we marvel at all of the details and the amazing things He has done (we will blog soon about that).

Like David, we pleaded and begged for Tori’s life to be spared, for us to be able to enjoy our precious baby on earth for the rest of our lives. We begged Him for fourteen months and waited for His final answer.

The Lord gently said no last Sunday and our hearts are finally at peace. A peace only He can give.

We trust His Word, and we trust that He has something incredible in store for our lives, and that Tori’s short life was just the beginning. The impact of her life on the world is not fully known, and we can’t wait to see how it unfolds. 

In the meantime, we will continue to praise Jesus for the things He has done and all He has yet to do.

Silence 

  

For the past four months we have had the constant humming of an oxygen concentrator in our home. Every few minutes we would hear the loud noise of the suction machine. There was constant noise and we eventually became numb to it all…

…until it stopped.

We turned off the oxygen concentrator when Tori went to Heaven and were immediately aware of the loud silence that filled our home. 

When I woke up this morning our home was completely silent.

As it has been said before, silence is deafening.

It is difficult, because those machines helped keep Tori comfortable and reminded us that she was still alive.

But, more than anything, the silence is comforting

It means that our Tori is no longer reliant on supplemental oxygen, suction machines, and other devices. She is KRABBE FREE. Her body is no longer being ravaged by this horrific disease. 

As Brennan has said many times, we are inherently selfish humans so we never wanted to let her go. Yet, as parents, the most selfless thing we could do was allow her to go to Heaven as she did, where we KNOW we will see her again someday soon and spend eternity with her.

When Tori left us on Sunday, she couldn’t smile, talk, move, laugh, yawn, or even sneeze. She needed oxygen to function. She was broken.

Our hearts are so overwhelmed with joy at the knowledge that she can do ALL of these things and even more now that she is with Jesus.

Yesterday her brain and spinal cord were donated to the University of Pittsburgh to further their research of Krabbe.

Today we will take this dress and (a duplicate of) her buddy to the funeral home for them to dress her for the last time. We have chosen to not see her body again on this earth because she isn’t in it. 

Our lives will never be the same, but we will continue to live as we did while Tori was with us – with purpose, with love, and with JOY. 

We taught her to live with joy and love despite our circumstances, and we need to continue to live that way until we meet her again. It won’t be that long in the grand scheme of eternity. ❤️

No Regrets

  
Tori has been in Heaven for twenty-six hours now, and while we miss her deeply, I cannot express the peace that I feel.

I have often pondered over the past fourteen months whether it is “better” (as if there is any good way) to lose a child suddenly or over time. 

To lose one suddenly and unexpectedly means that they usually don’t suffer and it is quick, but you don’t always get to say goodbye. 

To lose one over time, as we did, means that you watch them deteriorate and you grieve for an undetermined period of time. But, you can cherish each moment and make purposeful memories with them, grieving along the way.

I now know that the way we lost Tori is the “better” way. 

We have no regrets about how we lived out her life. We knew we only had her for a short time on this earth and we treasured every moment. 

Yes, we loved our adventures with her and loved checking off Bucket List items; but, what we loved most of all was that we spent hundreds – maybe thousands – of hours holding her, cuddling with her, loving her. It was our favorite thing to do.

We chose joy – and continue to do so – and when she left this earth yesterday we were somewhat ready (is any parent ever fully ready? No.). 

We feel immense peace that is from the Lord alone.

We will absolutely go through the grieving process again, but I think (probably wrongly) it will be a little easier this time (as opposed to the past fourteen months of our lives) because we know she is healed. She is happy. She is in the best possible place and is with Jesus. 

We cannot express how stressful the past few months have been at times, as caring for her became increasingly intense and she began having “episodes” of turning slightly blue on occasion. Overall she was doing well still, but there were moments of panic in the last month.

It is going to take months to recover from the level of stress we have lived on.

We thought Tori was going to live longer, but we are so thankful that she didn’t suffer. She was never sick! She never had seizures. She was only hospitalized one time. She was so fortunate in so many ways and we know that God protected her.

God is great, faithful, gracious, and loving. We trust His plan and can’t wait to see how He continues to use Tori.

We are so thankful that God gave Victoria to us and we know that she will continue to change lives. ❤️