Tori’s Bucket List: See a Real Fire Truck

Tonight Tori was able to experience something really cool: a real fire truck!

The Hummelstown Fire Department invited us to come to their station for a tour and we were so excited to experience this with Tori.

Special thanks to the Fanning family for arranging this and for showing us around!

We were able to walk freely around the station, showing Tori the different pieces of equipment and letting her feel the different textures. Jeramie taught us about the life of a firefighter and explained what many of the pieces of equipment are used for.

Later, they turned on the lights on one of the trucks so that she could enjoy the lights – and she certainly did!

Jeramie and Rich gave her a Hummelstown Fire shirt and a very special patch (not sure of the proper term) that goes on their helmets.

They then took us for a ride, which was really neat. I can’t imagine driving one of those huge, heavy trucks! Tori really enjoyed the red lights in the back where we were sitting.

It was a really great experience and we can’t thank you enough for making this possible for Tori.

(Bonus points to the ones who can guess why we dressed her the way we did ;) )

Take Action to Implement Newborn Screening in PA

Tori’s story being in the news last week has started an amazing campaign to get Pennsylvania to start screening all newborns for Krabbe and other similar genetic diseases! 

The law was passed over a year ago but has yet to be implemented.

Hunter’s Hope has created a form to make it very easy for Pennsylvania residents to contact their state representatives in regards to the implementation of Act 148 of 2014 (“Hannah’s Law”).

Please send a letter – it takes thirty seconds! Then share this with everyone you can. 

You can personalize the letter for Pennsylvania and send it here.

If you aren’t a resident of Pennsylvania, you can write your own state legislators here.

Let’s make it known that we want newborns to be screened for Krabbe at birth!

Tori’s Bucket List: Meet Bumper the Seal at Hersheypark

Brennan’s sister, Kelly, works in the Entertainment Department for Hersheypark and she has been instrumental in many of the special things Tori has been able to experience at Hersheypark.

She contacted us last week with an idea to have Tori meet one of the resident seals at Hersheypark – Bumper. She arranged a private experience for us and it was so neat! We quickly added this to her Bucket List because it fit so well!

Tori got to see him, smell the fish, and even feel his back. She seemed to enjoy it!

Thank you, Aunt Kelly, for always thinking about meaningful experiences that Tori can enjoy!

Photographs and Memories

My philosophy as a photographer has always been to overshoot rather than undershoot. I’d rather have many unneeded photos that I end up deleting than to not have ones that are necessary.


From the day Tori was born she was photographed daily in an attempt to capture everything, to share her with family and friends everywhere. I would take pictures while Brennan was at work to text to him. I would send them to my parents in California. I would post them on Facebook and Instragran daily, which helped people fall in love with her (even before she got sick).

In a way, this helped everyone feel like they were right here with us instead of across the country.


We captured as many expressions and moments as possible – on camera and on video – so that we wouldn’t forget anything.

There were those who commented about my obsessive photo taking at the time, in jest, I assumed, saying that I was clearly a first-time mom because of all the photos I posted.

I don’t regret a thing.

We had no idea what was lurking around the corner; we had no indication that we would lose so much of Tori on January 7, 2015. 

Now all we have are these thousands of photos and videos to remind us of her personality before Krabbe.


One day (without a miracle), the photos of Tori on TimeHop will be only from the distant past. No new photos will have been posted because she won’t be with us here on earth any longer. 

And that is going to be painful.

I have realized lately that now, now that we know that time with Tori is painfully short, I take photos constantly because I am desperately trying to capture every angle, every detail, every expression in a vain attempt to hold on to her. 

It’s almost as if I am hoping that, if she leaves us, these photos will take me back to these moments of holding her, that they will remind me of how it felt to cuddle with her. That I will be able to almost feel her weight in my arms.

I know that nothing will bring her back, but these photos will help ensure that we don’t forget the little things about her, the things that typically fade with time.

Ultimately, we have realized that we don’t  know when the last photo of her will be taken, so we subconsciously live as if each day could be the last day we have with her and photograph as much as we can.


The point of this post is this: 

NO ONE is promised tomorrow. No one. 

Though I wish we would be the last parents to lose a child I know that, sadly, it isn’t going to be the case. For many it will be unexpected, with plenty of room for regret; for others it will be like our journey – expected and yet the length of time left is unknown, also leaving room for regret. Both are excruciating.

Brennan and I will never be the same. Tori has changed us in incredible ways and we pray that these changes are permanent. We are better people because of everything we have gone through this year. Perfect, no. Improved, definitely.

So, here are a few things that Krabbe has taught us in the past ten months, and we want to challenge you with these very things today:

Time is short, even if your children outlive you. In light of eternity, life here on earth is merely a vapor, gone all too soon. Love them fiercely and abundantly.

Take more pictures than you could possibly ever need. Enjoy every possible moment with your family. Treasure each stage of your child’s growth because it will all too soon be replaced by another. 

Don’t let the little things bother you. Keep a clear and healthy perspective on life and let that transform how you treat people. Remember that everyone has a story and a context and if you don’t know their context you will likely misjudge them.

Remember when you are frustrated with your children that there are parents out there who would do anything to be reprimanding their child because theirs was taken far too soon.

Focus on what really matters in life and stop making a big deal of those things that don’t matter…like red Starbucks cups 😉

Choose joy every single day. Choose love every single moment. Offer grace freely even when you don’t feel like it. 

And take as many photos as your heart desires. ❤️

Because you have no idea when your life – or the life of a loved one – will be over.

Response from Department of Health

This is the letter that several people have been sent in response to the Krabbe screenings:

Sent: Friday, November 06, 2015 12:32 PM
Subject: Re: Krabbe Screening

Thank you for writing. The Department of Health will do everything in its power to ensure that babies with genetic diseases receive timely and appropriate care. We understand that these cases can be devastating for families, and are working diligently to implement the act efficiently and with compassion.

The law passed by the legislature calls for the Newborn Screening Advisory Committee to approve any newborn screening test changes before they are implemented. In the coming weeks, the Department will be meeting with the Committee to ensure we are moving forward to protect children and their families. The department cannot move forward without the approval of this committee. The plan is to begin testing in February 2015, pending approval of the committee.

Though the Krabbe legislation, which was signed into law in October 2014, called for implementation within 60 days, resources were not allocated to appropriately administer these screenings. While the budget impasse is ongoing, and adding these new screenings could cost up to $3 million dollars annually, we are looking at ways to begin approved testing regardless of the challenges.”

Please be assured that the Department is committed to improving the health of all Pennsylvania newborns.


Karen M. Murphy, PhD RN

Secretary of Health

Pennsylvania Department of Health

Five Years Ago Today…

…we said “I do” and promised to love each other for better or for worse… 

We had no idea what the next five years would bring, but we knew we’d get through it all together, as a team.
Though the past ten months have been filled with deeper sorrow than we have ever known, we have only grown closer together. We are stronger than ever.

We promised that day to keep God in every aspect of our marriage and to glorify Him through our relationship. He is using us in ways we never imagined.

Brennan, I am so thankful for the gift that you are to me, for the father you are to our precious Victoria, for the godly leader of our home that you have become. You are my perfect match in every way. 

You give me strength to get through the day and you let me lean on you when I am weak. You do so much to provide for our family, allowing me to stay home to care for Tori. I can’t imagine going through any of this without you ❤️

These first five years flew by, just like everyone said they would. I’m so glad I get to spend my life with you by my side.❤️

Happy Anniversary!