Category: Child Loss

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.)

One Step at a Time

The hill from the employee parking lot to the building where I work is gigantic. It is long, steep, and, especially when it’s cold outside, the prospect of walking up to work is daunting. Most days I am spoiled because Brennan drops me off at the entrance and then goes to park the van; but, on days when our schedules do not match, I am left to climb the mountain. And I don’t want to do it most days.

The challenge is half psychological and half physical. I’m not in great shape – yet – so that’s part of it. But, when I look at the hill I also have to convince my brain that I can do it because it feels like I will never make it, like I will fail.

What I have found is this: if I focus on my feet and on taking one step at a time instead of looking up to the top of the hill, it is far less challenging. If I take it one step at a time, it’s not that bad! I make it to the top of the hill, a little out of breath, but I can do it. I succeed.


This analogy is a perfect one for our lives right now: we’re nearing the one year anniversary of Tori’s heaven-going; some days it seems like our hearts will never fully heal, that it will be forever before we are reunited with her again. We long to hold our baby girl and gaze into her beautiful eyes once more, and that time (and heaven) seems so far away.

But, when we take the journey one step at a time, focusing on the Lord and on one task at a time, it’s so much easier and we feel refreshed. We don’t feel overwhelmed or tired. We feel at peace and we know that we can take the next step. Why is it so hard to remember to do this?


Whatever your mountain might be today, focus on the next step, not on the entire climb. Allow the Lord to guide you and sustain you; He is faithful and will lead you well.

Give your burdens to the Lordand he will take care of you.
He will not permit the godly to slip and fall. – Psalm 55:22 (NLT)

Give all your worries and cares to God, for he cares about you. – 1 Peter 5:7 (NLT)

Saying Goodbye to 2016

Tori was physically part of our lives for parts of four years: 2013, 2014, 2015, 2016.

2017 will be the first year we will experience her absence, the first year we will have to say that she passed away “last year” and not this year.

We cannot stop time, nor would we want to do so. Every day that passes is a day closer to seeing our girl again in Heaven. Yet, at the same time, my heart aches as we enter a year she will never know, a year we are forced to experience without her.


2016 was a bittersweet year filled with transitions for us. To name a few:

  • Bitter: Tori went to Heaven;
    Sweet: She was healed from Krabbe.
  • Bitter: We sold our first home, the home Tori knew as her own;
    Sweet: We paid off Brennan’s student loan.
  • Bitter: I was left without a “job” as a mom, a role I treasured;
    Sweet: Finding a new position where I see Brennan and other friends daily.

While it is difficult to say goodbye to 2016, we are hopeful about 2017 and all that is on the horizon.

In 2017, we hope to:

  • Buy a house in Hershey (March) – can’t wait to tell THAT story!
  • Pay off the rest of Lesa’s student loan and be DEBT FREE
  • Publish my book (will pitch to publishers in Spring)
  • Save/raise enough money to do a round of IVF
  • Begin the adoption process
  • Host an encouraging event for those who have lost children
  • See PA make Newborn Screening for Krabbe mandatory for ALL babies
  • Succeed in raising funds for Hunter’s Hope through a pilot program
  • Plus many other smaller goals

Brennan and I both feel encouraged and we feel hopeful for 2017. The Lord has already opened doors that excite us (ones that we couldn’t even have dreamed up) and we know that He has great things in store for us.

Years will continue to pass without Tori here with us, so while this first one is the hardest, we recognize that the heartache will never fully go away. Instead of dwelling on what we cannot change, we choose joy and hope. We choose to continue to fight for Newborn Screening so that others will never know the pain we have known. We continue to be grateful for all the Lord has done in and through us, knowing that He isn’t finished yet.

As we enter 2017, we pray that the Lord will continue to guide us and show us the path He wants us to take. And we pray that for all of you, as well.