Hunter’s Hope Symposium: Thursday 

Today we heard reports on the Leukodystrophy Care Network that Hunter’s Hope is working hard to implement around the country. They are the voice of the family in ensuring excellent care and treatment for their child.

You can read more about the LCN here.

Leukodystrophy children have unique medical needs and issues and most hospitals have had little to no experience with these diseases.

The centers are going to be as geographically spread out as possible so that traveling can be reduced for as many families as possible. Currently, most affected families go to Pittsburgh or Raleigh. Once the LCN is established, there will be many more options.

Many times, doctors see kids like these and don’t bother to treat them because they are terminally ill. One of the questions asked of the potential of LCN center is this: 

‘Are you treating this child as though they are living? Or are you saying “go home, there’s no treatment?”‘

Children’s Hospital of Philadelphia became the first Leukodystrophy Center of Excellence and it was interesting to hear their presentation given that they are so close to where we live.

I loved this quote:

Dr. JoAnne Kurtzberg from Duke University spoke and gave great insight into what they have done in the world of leukodystrophies.

As always, Victor was very attentive 😄

Later, we heard reports on the current research findings – which are so promising! – and heard more about the results of the ten years of screening for Krabbe in New York State. 

They are also very close to improving the NBS test for Krabbe by looking for two specific biomarkers instead of just one. 

Exciting things are happening in the quest to find a cure for Krabbe and other leukodystrophies, and the future is bright. 

Overall, we feel encouraged by what we heard today and are so glad to be here. 

Meeting with the Physician General

Today I had the privilege of attending a meeting with Representative Angel Cruz and his staff, Dr. Rachel Levine (the Physician General of Pennsylvania), and two other state representatives regarding Krabbe and Newborn Screening in Pennsylvania. 

Many other Krabbe families had hoped to attend but were unable to do so, and I conveyed that fact to those in the meeting. 

Dr. Levine opened the meeting with a recap of all that has happened since Hannah’s Law was passed and also spoke about the meeting yesterday with Dr. Vockley, the governor’s office, Rep. Cruz and his staff, and Dr. Kurtzberg from Duke University by phone. 

Dr. Kurtzberg was invaluable yesterday as she filled the group in on her research and her transplant success rate (over 90%). Dr. Vockley expressed the same concerns he had at the April meeting and she refuted all of them, as expected. I was told that Dr. Vockley seemed to be open to changing his mind about Krabbe, so the August NBS meeting should be interesting. 

Dr. Levine then looked at me and said she mostly wanted to hear my perspective, as a parent, and gave me the floor. I was surprised but pleased with the opportunity. 

I shared with them why we are so passionate about every child being screened for Krabbe, and we had a wonderful discussion about the topic. I answered questions Dr. Levine had and also asked some of my own.

I also mentioned our concern about Pennsylvania’s two-tiered system which doesn’t screen all babies in the state equally. Dr. Levine agrees wholeheartedly about the system being antiquated and in need of reform.

We discussed the misinformation being spread by hospitals (claiming they are screening for Krabbe) and I asked for clarification on what was actually happening.

Dr. Levine stated that if parents in Pennsylvania ask for their child to be tested for Krabbe it will be done.  

However, that requires knowledge about the disease, and I told those in attendance that Brennan and I had NO idea that it existed or that we were carriers. How could we have asked?

Rep. Cruz then asked the Dept. of Health to create an educational pamphlet or some similar method of communication to educate parents, obstetricians, and pediatrician about the fact that they have the right to ASK for the Krabbe screening and it will be done. Dr. Levine said that they will bring this to the attention of the Secretary of Health immediately.

While no immediate actions were taken, the discussion was positive and much better than I had anticipated. 

Dr. Levine was kind and genuine, and (which she didn’t directly say this) I truly believe that she will do what she can to ensure that Krabbe is added to the mandatory panel in Pennsylvania.

Progress is being made, and we truly hope that Pennsylvania will be the fifth state very soon to automatically test ALL babies for Krabbe! 

Hospice Butterfly Release

Today, Hospice of Central Pennsylvania held a butterfly release to honor our loved ones who have passed away. Though Brennan had to work, I went to represent our family and to release a butterfly in Tori’s honor.

It was held in a beautiful part of the Capital Area Greenbelt that has been made into a garden – the Five Senses Garden.

Each participant was handed a little white folded triangle that contained a butterfly, eager to escape and fly away. Mine was definitely ready:

We released them in unison and watched them fly away:

I looked around at those gathered and I wondered about each of their situations, hoping that they weren’t there because they, too, had lost a child, but I’m sure I wasn’t alone.

Thank you, Hospice of Central Pennsylvania, for not only caring for our loved ones while they are dying, but also for continuing to so thoughtfully care for those left behind. ❤️



When Jordan Hill Visited…

Somehow we neglected to post on this blog about our visit from Jordan Hill of the Seattle Seahawks in April! I was reminded of this when our story appeared on ESPN today, so I thought I’d write about that day for our own memory later.


We had been contacted by a mutual friend of Jordan and his wife, Cristen, asking if we’d be interested in adding “Meet an NFL Player” to Tori’s Bucket List  because Jordan had heard about Tori and wanted to come meet her when they were in the area visiting family. We set up the visit and it was about a month away.

We have joked that Tori must not have been a Seahawks’ fan because she decided to go to Heaven two weeks before Jordan and his wife were scheduled to visit.❤

Once she passed, we didn’t expect to meet Jordan and would have understood if they had canceled their visit…so when he and his wife came over on April 12, we were so excited!

The ESPN article talks about the visit in detail and articulates the emotion of it all very well. Thank you, Sheil, for writing about our story and putting Krabbe back in the spotlight nationally!

Most of all, thank you, Jordan and Cristen, for your kindness and for honoring our daughter in this way. We will treasure the autographed shirt that you brought for her!❤

Even Though…

I love when God speaks to you so clearly through circumstances. If you come across a passage of Scripture once in a day you might read it and then move on. When it appears three times, separately, in three different books/blogs, you pay attention.

Today I was finishing up “Amazed and Confused” by Heather Zempel and began reading “Praying God’s Word” by Beth Moore. In addition to those two books, I read an excellent post by my friend Judy about rejoicing in God no matter what comes our way.

All three of these resources referenced and spoke about the SAME passage of Scripture.

What was the common passage?


“Even though…”

Habakkuk 3:17-19 is not a new passage to me. It’s one I considered many times throughout our journey with Tori because it absolutely applied to our situation.

Habakkuk is stating that no matter what happens, no matter how hard things become, he would rejoice in the Lord and be joyful. 

Heather Zempel’s commentary on this book of the Bible – and on this passage, specifically – is excellent. Here are a few of my favorite quotes:

“God is still good, sovereign, and faithful, despite the circumstances we see around us, and is therefore worthy to be praised.” (pg. 153)

“We learned that faith was not about conjuring an idea in our heads and finding ways to fuel it; faith was recognizing that God always had something better in mind than what we could see in the present circumstances. We understood that perspective might not change the facts of our reality, but they certainly changed our perception of reality.” (pg. 156)

Through it all, we trusted (and continue to trust) the God who made us all, who sent His Son because He loves us lavishly, and the One who knows what the future holds.

“What’s the difference between people who face the unknown and see fear and those who see opportunity? What makes a person look at a dead-end and see open-ended possibilities? Story. The story we have been told will set the stage for what we expect in the next chapter and will inform us of the role we play.” (pg. 157)

“When Habakkuk came to a place where God’s actions collided with his expectations, he found the only hopeful response was worship that was rooted in an unshakable and undeniable awareness of God’s character, ways, and works.” (pg. 160)

“As we see God more, we are able to praise Him more. We more clearly recognize and acknowledge the hand of God at work in our lives, and the practice becomes an act of worship and a hymnal for worship in days to come.” (pg. 164)

“Habakkuk is not just comforting himself by playing with ideas; he is speaking of the things that God has actually done. The Christian faith is solidly based upon facts, not ideas. And if the facts recorded in the Bible are not true, then I have no hope or comfort. For we are not saved by ideas; but by facts, by events.” – D. Martyn Lloyd-Jones (quoted on pg. 169)

“This brand of faith knows God can…believes He will…but worships even if He doesn’t.” (pg. 177)

“We can frame the character of God according to our circumstances, or we can frame our circumstances according to what we know of the character of God. We can let our circumstances inform what we know to be true of God or we can let what we know to be true about God inform our circumstances. As Warren Wiersbe said, “God doesn’t always chance the circumstances, but He can change us to meet the circumstances. That’s what it means to live by faith.”‘ (pg. 178-9)

God continually reminded the Israelites of the importance of remembering all that He had done for them, and yet they continued to forget. When they weren’t studying His word and their history, they lost sight of God’s goodness and plan and they strayed from His will.

As we said at the beginning of our journey, God has never been unfaithful to us, so why would He be unfaithful now? Because we have reminded ourselves for years of His wonderful works since the beginning of time and of those in our own lives, trusting Him with Tori came fairly easily.

“He works things together for His purpose and not our expectations.” (pg. 184)

“Whether He delivers from, delivers through, or delivers later, we know that He is always present.” (pg. 186)

‘His faith was not rooted in what he could see but in what he could not see in the moment. He anchored into the brand of faith that the author of Hebrews described: “Faith is the assurance of things you have hoped for, the absolute conviction that there are realities you’ve never seen” (Hebrews 11:1).’ (pg. 186)

Oh yeah, and Hebrews 11:1 (quoted above) was also the verse of the day on WordFM today so I heard it many times throughout my day.

“Sovereignty means that God is in charge. Eternally in charge. We need God to redefine our suffering against the background of eternity because eternity puts things into perspective.” (pg. 188)

When things don’t go as we had planned, do we run from God or run TO God? Why is it so easy for us to discard our faith just because things get tough? Why don’t we trust His proven faithfulness to be present in our own lives?

“I refuse to let what I don’t know keep me from worshiping what I do know.”
(pg. 190)

(I know it seems like I just quoted the entire book but I promise there is so much more wisdom to be gleaned – you should read it!)

This final quote is a great summary of our perspective on Tori’s short life.

We KNOW that there is ONE true God. We know that God is sovereign, that He is good and loving and gracious. We KNOW that there is a Heaven waiting for those who believe in Jesus and that this life is only the beginning. We are certain of these things!

We DON’T know why God chose us to be Tori’s parents, why He chose her to have Krabbe, and why He didn’t choose to heal her on earth so that she could grow up under our care. We don’t know what the future holds for us in regards to having more children. We don’t know. But, as the quote above says, we aren’t going to let these few unknowns keep us from serving and praising the One who does know!

We know that He has a plan for us and that Tori is waiting for us in Heaven. Whether or not God chooses to reveal to us His thoughts on this situation here or if we will find out in Heaven, it is still well with our souls.

Our faith isn’t blind, and it isn’t a band-aid. Our faith is the frame through which we view this entire life and it’s the source of our joy and our peace, and it’s the reason why we continue to praise God and choose joy “even though” we lost our only child. 

After all, our loss doesn’t change God’s character or His purposes for us. He is STILL good.

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.


Removing the Sting of Death, Part Three

Disclaimer: As with anything I write, I write with the understanding that we all process death and grieving differently – even as believers – and this is not a judgment or a criticism of anyone who handles these things differently. I write about my own beliefs and understanding of death given the hope that Jesus brings to us all, and I write about how this is playing out in my own life in hopes that it might encourage others in their own journeys. 

I have broken this into three posts because of the length. You can read parts one and two here.

It is often said that we tend to only believe God when it’s easy. Afterall, it’s easy to follow God when life is going well, when we have plenty, when things are comfortable.

As Job so beautifully demonstrated, God is STILL good and His word is still true even when we lose it all. 

He is still worthy of our praise and devotion even when we lose a child. 

And, true faith follows even when the way is unclear.

We need to realize that God’s Word is relevant in ALL parts of our lives, including death and other difficult times.

Do we believe the Bible or just parts of it that are convenient and easy?

What about when life is messy?

If we believe that the Bible is the holy word of God Himself, how can we disregard the promises and hope He gives even through the difficult issues?

The Bible mentions death numerous times, and those verses are typically followed by a reminder of the hope that we have because of what Jesus did on the cross. Here’s one example:

And now, dear brothers and sisters, we want you to know what will happen to the believers who have died so you will not grieve like people who have no hope
Then we will be with the Lord forever.
So encourage each other with these words.

– 1 Thess. 4:13, 17-18 (bold emphasis mine)

Paul tells us to ENCOURAGE each other about death in this passage. Death was never God’s plan for us, but Adam and Eve changed the course of history and death became inevitable. One bite of an apple (disobedience) brought death into the world.

“We are geared for perfection which is why we are always so disappointed in life.”
– Rachel Gunsauls

And yet, death is NOT the end for any of us. We are all born with eternal souls and we make the choice during this life to follow Jesus or to walk away from Him – a choice that results in an eternity in Hell.

For those who have chosen Jesus, we have no reason to fear death. Death is merely the next step toward our eternal home and we will be FREE of all of the issues this world contains. This world is NOT our home. One day we will be with Jesus Himself, forever, and that is GREAT news! That alone is reason to REJOICE always.

Romans tells us to be transformed by the renewing of our minds (Romans 12:1-2) and this happens when we embrace God’s Truth and allow it to transform us…this pertains to death as well!

Jesus told not to worry (Matthew 6:34), to not be afraid (multiple times), and to remember that He has overcome the same world from which we wish to hide (John 16:33).

We are instructed to dwell on things above not on earthly things:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand.
Think about the things of heaven, not the things of earth.
For you died to this life, and your real life is hidden with Christ in God.
And when Christ, who is your life, is revealed to the whole world,
you will share in all his glory…
Put on your new nature, and be renewed as you learn
to know your Creator and become like him.

– Colossians 3:1-4, 10

The world has no hope, but we do. And how are they going to find the hope that we have if we don’t live it out?

Here’s my advice:

Trust the Lord FULLY, even when you can’t see what He’s doing.

Don’t wonder what might have been, don’t have regrets.

Live life to the fullest NOW and focus on what matters – loving God and loving others.

Then you will have greater peace when a loved one goes to Heaven before you.

I long for Heaven more than ever before now that Tori is a resident of that wonderful place, and I am enjoying learning more about her current (and our future) home.

I know that someday we will be reunited FOREVER and will never be apart. The anticipation of that day brings such excitement, even though I have no idea how long it will be until we are reunited. All I know is that it will feel as if no time has passed at all since Heaven doesn’t operate within the time we know.

Does all of this mean that I shouldn’t cry when I miss her? Of course not. Grief is natural and I will never stop missing her.

However, I do believe that having a biblical perspective on death and Heaven eases the blow of her absence, and it brings me peace that cannot be otherwise explained.

Set your minds on things above…choose joy…be grateful…trust God.

Heaven, along with the knowledge that we’ll be reunited with our loved ones (who also knew Jesus), removes the sting of death, one thorn at a time.

Praise Jesus for His grace and mercy that make any of this possible.