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. 

Pieces of a Puzzle

Like everything in life, there are many pieces of our IVF and adoption journey that have to come together just right. We have to be able to afford it (likely $50,000 for both). We have to have a suitable home (closing in March, if all goes well). We have to have Krabbe-free embryos. We have to be matched with a birth family. There are many other examples, but overall we have to be patient and rely on the Lord’s timing.

In an effort to raise funds but also include others in our journey, we borrowed the idea to “sell” puzzle pieces for $20. The giraffe puzzle is 500 pieces, so that represents $10,000 of the funding needed. More importantly, it will be a physical display of all those who made it possible for us to have more children join our family.

We’ve had a great response so far and we are so encouraged!

If you would like to be a piece of the puzzle that helps build our family, here’s what you can do:

  • Send $20 via PayPal to Lesa.Brackbill@gmail.com OR
  • Mail a check for $20 to:
    P.O. Box 406
    Hershey, PA 17033

Once we have all 500 pieces claimed, we will put the puzzle together and glue it together/frame it. Someday we will be able to show Tori’s siblings all the love that was shown toward our family and who made it possible to bring them into our family.

Overall, we have already raised $1,100 and the auction hasn’t even begun! God is SO good!

The auction will take place here on January 20-25. In this group you will also see the other fundraisers happening (currently, Thirty-One; in February, LuLaRoe!). This is also where you will continue to see progress reports more regularly than on the blog.

Thank you all for the support and love you continue to show us ❤

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.

 

Our IVF/Adoption Journey

As you may have gathered, Brennan and I would like to expand our family and have more children. Our hearts long for this, and we’ve been working hard to make this happen. Unfortunately for us (and others with genetic mutations like ours), it’s not simple.

After much prayer and wisdom-seeking from others over the past two years, we have decided that it is unwise to do this “naturally” and are instead looking to use IVF and/or adoption as a means by which we can grow our family. We started the IVF process last summer but were halted in August because of a lack of funds. We’d love to do both IVF and adoption this year, but that would mean coming up with about $50,000 or more (adoption ranges from $25,000-40,000 or more!). Even with our frugal lifestyle, that’s simply impossible. 

This is why I went back to work in August. This is why we sold our house, paid off Brennan’s student loan, etc. – by doing so, we freed up a great deal of monthly expenses that we can now put toward this endeavor. We are trying to save as much money as possible to go toward IVF/adoption, but even with all of our efforts we will still humbly admit that we need help to raise the funds necessary.

You all have been SO generous to us over the past two years so we didn’t want to just do a fundraiser to ask for money. We wanted to offer YOU a gift, something in return…and we have the perfect thing.


As you may remember, I wrote a song this summer about how I felt after Tori was diagnosed. Thanks to our amazing friend, John Amodea, the song has been recorded and is available to download!

Here’s what we’re hoping will happen: enough people will buy the song (via the “Tip” button on the NoiseTrade page) that we can have/adopt a child in 2017!

If you cannot afford to buy the song, please download it as our gift to you, and perhaps share the page on your own page.

If you would like to buy the song, go to this link: http://noisetrade.com/lesabrackbill/lord-remind-me

We’re doing this as a “pay what you feel” download…and whatever you can give is so greatly appreciated. So feel free to change the “tip” amount to whatever you would like to give.

Please share our story and the song with others, too, if you are willing.

We hope you enjoy the song and that the Lord uses it to encourage you.


In addition, Brennan and I will be hosting an online auction to help cover the cost of IVF/adoption as we seek to expand our family! The auction will be held on Facebook (January 20-25, 2017) and we are in need of donors!

Here’s the link to the Google Form we created for item donations; if you are a consultant for a company, an artist, seamstress, craftsman, musician, etc. and have something you would be willing to donate to our auction, please fill it out so that we can start to build our inventory! Or, if you have a service you can provide (massage therapy, hair cuts, photography, etc.), that would be great as well!

We’d love to have at least 100 items in our inventory!

You can access the auction here.

We will gladly credit you/your business for your donation and offer a link to your website/Facebook page as well in hopes that you will be blessed by this auction as well.


We want to be parents again more than anything. With your help, we can do this!

Thank you in advance for your support!  

The Big Move

I’ve moved far too many times in my life.

  • From Hayward, CA to Red Bluff, CA (and then another move within Red Bluff).
  • From Red Bluff to Azusa (far too many moves to count while I was in college!) – 525 miles.
  • From Azusa to Glendora (and two moves within Glendora).
  • From Glendora to Harrisburg, PA (five moves since I moved to Pennsylvania) – nearly 3,000 miles.

Each move has brought with it new adventures, new challenges, new surroundings. Most moves were welcomed, though some came from circumstances I could not control.

This move is different than all of the above.

This move means leaving the home we fixed up, the home where we became a family, the home from which Tori went to Heaven. So many memories in less than four years.

As of this morning, we owned this house for three years, eleven months, and eighteen days. 1,449 days. I haven’t lived anywhere this long since I left my parents’ house when I was eighteen.

And I think that’s partly why I have struggled with the idea of moving. I know it’s the plan, and I know it’s a great one because of the financial progress we will make. My heart hasn’t been communicating with my mind on this one.

But, it is finished. And I feel like this morning brought me closure. 

Let the new adventure begin ❤️

A Season of Waiting

It’s hard to believe that it’s October already. September was a blur, filled with many changes and hardly any free time. Now it’s Fall and the temperatures have cooled, the leaves are starting to change, and we are in a season of waiting and expectation.

My job has been going well, but they’ve been putting me on the schedule for far more hours than I had requested, leaving me feeling exhausted and with little time at home. Between working five days a week (as opposed to the requested 2-3 max) at The Hotel and one day a week at church, I’ve been left with only Sundays off consistently, and I’m hoping that changes soon. I haven’t had much time to write, read, or rest, and I feel weary.

In addition to working so much, we had to say goodbye to Brennan’s car last week, leaving us with only one vehicle for the foreseeable future. This means many hours of sitting at The Hotel for one of us when our shifts don’t coincide (all too often). Now one of the windows on the van isn’t working properly and we’ll have to have that fixed soon. Money is tight, we each have our own minor physical struggles (ear infections for me, leg injury for Brennan), we’re too busy (and that is out of our control), we miss Tori, and we’re tired. It’s so easy to feel discouraged right now.

Tori has been in Heaven for six months and it’s amazing how easily it is for us to lose perspective already. After all that we’ve been through, all that God has brought us through, it’s still so easy to get wrapped up in all the things that aren’t going our way. We realized this earlier this week and we corrected our perspective – what we’re enduring now is nothing compared to what we went through with Tori, and we can’t let ourselves be overcome by these trials. We can’t allow ourselves to forget that God is holding us in His hands and is in complete control! He is faithful, He is good, and we are trusting Him during this season of waiting and uncertainty.

There are some exciting things happening this month for us:

  • We’ve been working feverishly to get our house ready to be on the market, and that will happen THIS WEEK! We’re so excited! You can read about why we are selling our home here. We cannot wait to be DEBT FREE!

  • We were featured in the Lancaster newspaper yesterday and are so thrilled that Tori is continuing to make waves across the state!
  • My manuscript is being edited THIS MONTH and we hope to start pitching it to publishers in November! I also have another book idea brewing, so I hope to start working on that project soon.
  • We’re headed to California this week for a quick trip to Disneyland! I was supposed to photograph a conference in SoCal and had already purchased my plane tickets when the conference was canceled…so, we decided to go to Disneyland instead!
  • At the end of the month, Brennan and I will be taking a LONG awaited trip to Nevada, Utah, and Arizona with Mission: Imperative where we will be going to most of the National Parks in the area! We cannot wait for this adventure, especially since all the details are taken care of and we paid for the trip long ago! What a great way to celebrate six years of marriage doing something we both love – traveling! ❤
  • I’m continuing to write for The Transcend Project along with members of our church. Please check it out! There’s SO much great content on there!
  • Also, I finally decided to release the live recording of the song I wrote this year (my first and only!). You can hear it here.

A few prayer requests:

  • Please continue to pray for us as we continue to navigate life without our Tori. We miss her terribly and there isn’t a day that goes by without us thinking about her constantly. We’re still doing well, but life is obviously very different without her.
  • Please pray for wisdom with decisions regarding potential offers on our home and where we will live after the house sells.
  • Please pray for favor with publishers, and that the right one will step up to help us tell Tori’s story and save lives through Newborn Screening.
  • Pray for physical healing for both Brennan and me.
  • Pray for us during this season of “waiting” for so many things – our home, future children, the book, etc.

Trials in this life serve a few purposes, but one of the most important is this: this world is NOT our home. It can never make us fully happy – only Heaven and the One who reigns there can. These difficult times won’t last forever – we just have to remember that. And so we wait on the Lord who is always faithful and good. ❤

NBS Advisory Board Meeting, August 23, 2016

Today I attended the quarterly meeting of the Newborn Screening Advisory Panel of Pennsylvania as I did in April and will continue to do until Krabbe is on the mandatory screening panel (and maybe even after that, but we’ll see).

You can read about the April meeting – and some background about the purpose of the Advisory Panel – here.

You can read about the meeting with the Physician General in June here.

This meeting was uneventful compared to April and Krabbe wasn’t even on the agenda for discussion. Dr. Levine, the Physician General of Pennsylvania, was in attendance for the beginning of the meeting and her presence seems to have had an effect on the panel given the tone of the discussion. 🙂

Positives:

  • Testing for X-ALD will begin on April 1, 2017 and testing for MPS-I will begin on January 1, 2017. Both of these are lysosomal storage disorders (LSDs) just like Krabbe. There are funding issues being worked out at the moment, but the panel is hopeful that these implementation dates will remain in place.
  • Testing for Pompe has been in place for six months; they have already identified eight positive cases.
  • The panel will be submitting a “Program Revision Request” to fund these two new tests AND will include the future of NBS in the proposal as more diseases (Krabbe?!) will be added in the future.
  • The Department of Health has created a new brochure about Newborn Screening to better educate new moms and dads about what is available in Pennsylvania and how it works. It will be visible on their website in a couple of weeks.
  • The panel is hoping to merge the two panel system that currently exists in Pennsylvania, which would make ALL of the testing mandatory and not optional for each hospital (meaning that all babies would finally be screened equally and your zip code won’t determine life or death!). Currently, only seven diseases are mandated in Pennsylvania; the rest, including Krabbe, are on a “follow-up” panel and each hospital chooses which diseases from that list will be included on their screenings. Ridiculous, I know. Thankfully, they all see that it’s ridiculous, as well.

Since Krabbe wasn’t mentioned in the first half, I made a point to talk to a few specific people during lunch to find out what I wanted to know:

  • According to PerkinElmer – the lab through which all of the testing is done – Hershey Medical Center is STILL the only hospital in the entire state testing every baby for Krabbe and for the other five lysosomal storage disorders (LSDs) in Hannah’s Law (Act 148 of 2014).
  • I verified YET AGAIN that if a mother asks for her child to be screened for Krabbe in a Pennsylvania hospital (or birthing center), the hospital has to do it.
  • PerkinElmer said that only a handful of requests for Krabbe testing have come through, which shows a great need for education until the testing is mandatory.

During the “public comment” section at the end of the meeting, I was able to address the issue of hospitals telling their patients that their babies were being screened for Krabbe automatically, and the panel was genuinely alarmed that this is happening. This launched a discussion about how they can improve the communication and education because it’s a serious problem and is also opening up hospitals (and the state) to law suits.

ONLY Penn State Hershey Medical Center is automatically testing for Krabbe in Pennsylvania, BUT, if you ask your hospital then they have to screen your newborn for Krabbe. Ask to speak to the Newborn Screening Coordinator at the hospital as they should be aware of this. If not, make them aware 😉

We found out that they are going to give the new brochure about NBS to the moms after birth along with everything else they give them, and Ashley (from Rep. Cruz’s office) and I both remarked that there has to be a better time, perhaps during prenatal appointments? Neither of us remember much of anything after our babies were born. That is NOT the time to give the mom a stack of papers, with this brochure included, and expect them to read and make these important screening decisions! The men agreed after we brought it up 🙂

In regards to Krabbe specifically: I asked Dr. Vockley if the conversation he had with Dr. Kurtzberg in July had affected anything (they spoke about her research and she schooled him, basically); he stated that until something is published, nothing will change. We know that Dr. Kurtzberg has submitted data for publishing, so now we just wait. Once that data comes out, it sounds like having Krabbe moved to the Mandatory Panel could happen quickly. Maybe.

Afterward, Rep. Cruz’s staff (Ashley and Rachel) and I spoke with Dr. Vockley for quite a while regarding Krabbe and Newborn Screening, and, overall, he was FAR more positive (and respectful) this time than he was three months ago. I believe that his conversation with Dr. Kurtzberg has shown him that there is MERIT in screening for Krabbe at birth; that the transplants are successful; that it’s WORTH IT.

He mentioned again the lack of data about the success of NBS and transplants for Krabbe; so, I pointed out to him that since only FOUR states are screening, it’s no wonder that we have no data! If you aren’t screening at birth, you aren’t catching it early enough to transplant, therefore, no data. He surprisingly agreed with me. I then added that, since Pennsylvania has such a high rate of leukodystrophies, WE could be the state providing that data and making headway in research. And he agreed with me there, too!

In summary, there have been no changes, no possible implementation dates, BUT, overall the attitude toward NBS screening HAS seemingly changed, and we feel hopeful that it won’t be long before every single baby in Pennsylvania is given a chance at life because of NBS.

If you read all of this, thank you. 🙂 Please spread the word to other Pennsylvanians so that every new mom is aware of the options for Newborn Screening! No matter what state you live in, you can write letters to your legislators HERE and let them know that this is important to you!

September is Krabbe/Leukodystrophy Awareness Month AND Newborn Screening Awareness Month. Let’s do our part to educate!