Hunter’s Hope Symposium 2017 – Day Two

Today we heard updates from several hospitals that are working toward becoming Leukodystrophy Centers of Excellence in order to better care for these children and their complex needs, and we also heard research updates.

I'm going to jump right to the research updates because this was incredibly exciting.

First, we were told that Dr. Escolar has a paper that will be published the first week of September (a week AFTER the next NBS Advisory Panel meeting in PA) and this paper could very well get Krabbe onto the federal RUSP because it answers questions that previously weren't as clear. Why does the RUSP matter? Many states will only screen for diseases that are added to the Federal RUSP; once Krabbe is added, many states will automatically test for it!

As you probably remember, one of the things we (and many other families) have been told as we advocate is that they need published data. We've all been waiting and waiting for something to be published to help our case for adding Krabbe and this will apparently be it!

Second, and THE most exciting part: they are so close to a cure for Krabbe. The doctors didn't say it like that but it was apparent that is what they meant. Dr. Escolar and others have been treating twitcher mice with Krabbe successfully using the bone marrow transplant AND gene therapy together and the outcomes have been unbelievable!

This chart shows the life span of mice who were untreated, treated with bone marrow transplant only, and a combination of the two. The combination therapy is the top blue line. The mice who had the combination therapy in 2015 are STILL LIVING and show no signs of the disease!

The FDA has approved the idea but it won't go to clinical trial for 3-5 years unfortunately. In the meantime, our hearts are so hopeful because this is incredible news.

Thirdly, they discussed the improvement in the NBS test itself and the near-elimination of false positives using two factors and not just one (low GAL-C activity and high psychosine levels) and by using a computer algorithm to sort the data that has proven to accurately predict the form of the disease (early or late onset).

I tried to simplify all of this the best I could. To sum it up, research has made leaps and bounds in just the last two years and they are closer to a cure than ever before!

Dr. Kurtzberg from Duke also reported on the success they are seeing in stem-cell treatments of Cerebral Palsy and Autism. Stem cells from cord blood are incredible tools and doctors are doing amazing things with them.

Hunter's Hope does such an amazing job of not only funding research but also coordinating the dialogue and cooperation between scientists who are all working toward the same end. If you would like to support them, you can click here! Our goal is to raise $3,000 for them before Friday's walk!

Hunter’s Hope Symposium 2017 – Day One

Symposium time is here!

It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the week where we can let our guard down and enjoy these precious moments with our Leukodystrophy family knowing that we fit in here, that we are "normal" here.

None of us would have chosen to be in this position, to be in this "family" of such suffering and grief, but we cherish the relationships and the joy that have come out of everything we have endured.

If grief and pain were measurable, the weight of it just from these precious families here would be astronomical in size; every family here has lost – or will lose – a beloved child (or two), something which has been called the most painful thing a human can endure; and yet, all we see are smiles, joy, friendships, authenticity, and an appreciation for each and every moment. We see hope. And it's amazing.

This is our third year at the Symposium and it's the first one I have been slightly hesitant to attend, for reasons I am still deciphering.

Perhaps it's this: Tori was with us for the first one and she was cherished by all; last year she had gone to Heaven a mere four months earlier and everyone remembered her; will she be remembered this year?

Perhaps this: we now seem to fall into the category of parents who lost their children "a while ago" and it's strange. It's a different feeling being here now, a year after she went to Heaven…not a bad feeling, of course, just different.

I watch the parents with their living children and am amazed at how distant that feels. The suction machines, the feeding pumps – sounds so familiar and yet such a distant memory because I haven't heard them or thought about them in a year. Something that was once part of my daily life now feels like a lifetime away.

I'm not caring for Tori constantly now, and I'm not necessarily grieving anymore (though it will never fully be over), so it's a strange place to be. It's just Brennan and me now.

Perhaps it's strange to be here because it's a time when we're forced to remember that this was our life for fourteen months, and that we did lose our precious daughter. In daily life it's easier to move on because of distractions and tasks. Even though we talk about Tori daily and think of her all the time, it's different somehow to be here surrounded by other families going through the same thing we did.

Despite my emotions through which I am sorting (thanks for letting me process above), I am so happy that we are able to be here again. We're praying that next year we will have a new baby with us ❤️

As always, I will blog about the new research findings and everything else we learn throughout the week. So thankful for Hunter's Hope and all that they do to support Leukodystrophy families.

It's going to be a great week!

Even So…

The common theme of the past six months has been hurdles. Things haven’t been going as smoothly as we would like and we’ve come up against some significant challenges.

  • Buying this house came with one obstacle after another and cost more than we anticipated not only to buy it, but to do the necessary renovations (that still aren’t done because we ran out of money). It seems like all of our Dave Ramsey progress was lost and we’re having to start over again in our process to becoming debt-free.
  • We drained our savings (and our HSA) to pay for IVF (though MUCH of the cost was donated by generous and amazing people and we are SO very grateful!), and it’s tough to rebuild it.
  • We started an AirBnB in the apartment upstairs and have LOVED running it. It has brought joy to us and to the families and single mothers we have been able to serve and bless through this venture. It has also been hugely beneficial financially. 

    However, two of our neighbors are “uncomfortable” with the idea for ridiculous reasons (they don’t understand AirBnB at all, essentially) and they filed complaints with the township. We were forced to make a decision to either pay $450 and wait three months (and go to two zoning board hearings) to try to be rezoned for this type of use (no guarantee of approval), or give up and just get a tenant (less income, loss of the opportunity to help others enjoy Hershey and run an AirBnB; loss of space to host family and friends and bands (through RYFO.org) upstairs).

    Ultimately, we’ve decided to try to find a tenant because some battles aren’t worth fighting. The township needs to modify their rules about AirBnB instead of trying to make it fit into other molds and making it impossible for residents to do. I am proud of my letter to the township supervisors and hope that it will make a difference in the future for property owners to use their property as they choose.

  • I haven’t had much time to finish my book proposal or to find an agent, even though my manuscript has been complete (and edited) for six months. I’m struggling to remain positive about it being published, even though I believe that the Lord led me to write it for that purpose.
  • I am committed to do many good things, but finding a balance and remaining disciplined has been a challenge.

Even so, it is well with our souls.

It hasn’ t been ALL bad, but the hard things in life tend to overshadow the good; when we focus on the positive we realize that we have had some GREAT things happen:

  • We thoroughly enjoyed our trip to California, Oregon, Washington, and ALASKA in June and returned home feeling rejuvenated even though the trip was exhausting. Seeing the beauty of God’s creation and spending treasured time with family was worth every lost minute of sleep.
  • We found out that we have THREE embryos (out of the five) that are healthy! Two are not even carriers of Krabbe! The fourth embryo needs to be retested, and the fifth has chromosomal abnormalities that are not survivable. We are thankful for these 3-4 and will hopefully do the first transfer in August.
  • Thanks to my dad spending two weeks out here, we’ve nearly completed the basement projects (laundry room/bathroom drywall and paint, etc.). We’re going to be ready for hosting bands and other guests so soon! Since we’re giving up the AirBnB this space will allow us to continue to minister to bands through RYFO – an amazing network of host homes for touring musicians.
  • Brennan and I are trying to become much more disciplined than we are currently in every area of our lives. It’s a struggle but we must overcome and become self-disciplined.

Through it all, my heart has remained at peace because I trust the Lord completely and I have absolute faith that this is all happening for a reason. As the popular song states, “Let go my soul and trust in Him, the waves and wind still know His name…” He is still on the throne, He is still in charge, and, most importantly, He still LOVES us. In those moments when I feel worry start to encroach on my peace, I stop and pray and remind myself that He’s got this.

And so we press on, knowing that it will all turn out alright.

It Is Well

I have served as the worship leader at Transcend Church for a little over three months now. While I have led worship almost continually over the past 22 years in some capacity, this is the first time I have been “the leader” of a worship team instead of me just playing guitar and singing. This has certainly been a growing experience for me and I am so thankful for the members of the worship team and their talents and hearts for worship.

Few are aware of what goes into choosing a worship set – it’s far more than just picking songs you like. I typically read the Scripture for the upcoming sermon and prayerfully choose songs that go along with the sermon. Yet, sometimes it’s honestly just following the Holy Spirit’s guidance and how I “feel” about a particular song fitting in with the set.

This week was definitely a “feel” week as the passage did not easily lend itself to songs. While I was doing all of this, I considered that this Sunday was Mother’s Day but didn’t give it much thought.

As I leafed through my (gigantic) binder of music, a few jumped out at me, unrelated in theme at first glance – “Great Is Thy Faithfulness” would start the morning as a great reminder that God is trustworthy, merciful, and faithful. We’d do “Even Unto Death” and “Give Me Faith” to remind ourselves that the God we serve is worthy to be followed and trusted, no matter what. I chose a few other songs to fill in the set and thought I was done.

I grabbed my guitar and began playing through the set but it still didn’t feel complete. Later that afternoon the hymn “It Is Well With My Soul” – one of my favorites – came into my head and I knew that was what was missing. In addition, I decided to add Bethel’s song “It Is Well” to the end.

If you aren’t aware, the back story to the song “It Is Well” is one of the most powerful I’ve ever heard. Mr. Spafford lost his four daughters in a shipwreck, all at once. Four daughters. And yet, he penned the words to this poem (now song) and declared that it was well with his soul.

How can that be?

I contend that…

It can be well with your soul despite your grief. 

It can be well with your soul despite your circumstances. 

It can be well with your soul despite your questions and uncertainties of God’s actions. 

This can all be true because it isn’t dependent on you – it’s dependent on God. When you believe the truth of who God is (faithful, loving, merciful, kind, generous, good), when you believe His Word and His promises (there IS life after death for those who trust in Jesus!), and when you trust Him fully, there is peace within your soul that surpasses understanding (Phil. 4:7). We’ve lived it. We know this is true.

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We have a beautiful sign in our home that quotes this hymn, and it has been a great reminder to us as we’ve learned to live without Tori here on earth. We’ve truly learned that “whatever our lot” we can be at peace when we are trusting the Lord and following Him.


As I led worship this morning, the emotion of missing Tori began to well up inside as we sang the final verse of the hymn:

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul!

The emotion was two-fold: first, remembering the tragic circumstances that brought this song into this world and how deep the pain is when you lose a child; second, I long for this day – the day when Jesus returns and we are reunited with our precious Tori (and other loved ones who have gone before us). I cannot wait for that day and for the eternity with her that will follow.

I got through the song, but as the sermon began my eyes were teary as I pondered the joyous reunion that awaits us.


As the Bethel song by the same name says,

Through it all, through it all, my eyes are on you.
Through it all, through it all, it is well.
So let go, my soul, and trust in Him
The waves and wind still know His name.

The same Jesus who calmed the storm that threatened to wreck the ship He and His disciples were on is the same Jesus who lives today and loves us deeply. He is still in control, even when we can’t feel it.

Being well in your soul doesn’t mean that things are perfect, or that you pretend to not be in pain. It simply means that you trust Jesus more than you fear your circumstances.

Yes, my Tori is gone. Yes, my heart longs for her. Even so, it is well with my soul. 

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I don’t know why I was led to put the songs on the set list today that I did, but I know that, if nothing else, my own heart was encouraged by the words of these songs. Hopefully the Lord used them to speak to others, as well.

A Dream Years in the Making

Brennan and I have lived in four different ZIP codes since we got married.

17070 (New Cumberland) – above a (loud, busy) pub. On the third floor, with no air conditioning. Quite possibly the worst decision of our marriage (thus far)! 

(Photo credit: PennLive)

17033 (Union Deposit/South Hanover Township/Hershey) – perfect location, cute second floor apartment:

 

17109 (Lower Paxton Township/Harrisburg) – our first home purchase/flip/sale, the home where Tori lived and where she left this earth. 

17112 (Lower Paxton Township/Linglestown) – with our friends in their in-law apartment for four months as we waited to move to Hershey.

Two apartments, a house, and an in-law apartment as temporary transition space.

As our lives became increasingly rooted in Hershey, we knew this is where we wanted to settle. To be close to work, to Milton Hershey, to our doctor/chiropractor, nearly everything in our lives would be a true blessing.

Settling down and putting down roots is a daunting concept to me for some reason, but a few years ago I realized that I would be happy to live in Hershey for a long time. Brennan agreed.

So, we began to dream. We figured out the area where we wanted to live and “told God” the quadrant boundaries (haha).

We knew that it would take a miracle of sorts to be able to purchase a home in downtown Hershey given the market values of homes there. It’s expensive.

We refuse to have a huge mortgage because we don’t want to work just to pay for a house; so, we did the math and figured out our maximum purchase price. But, we also knew that our price limit would make it a challenge to find a home there.

After Tori went to Heaven, we focused on finishing our home and listing it on the market. It went under contract two weeks after we put it on the market and we closed on December 8, 2016. Once it was under contract we made arrangements with our friends, Lauren and Casey, to live in their in-law apartment until we could figure out what was next. We are so thankful for their hospitality.

On Thanksgiving day, two weeks before closing, we got a message from a friend of ours who owns several properties in Hershey. Steve said that he knew we were selling our house and wondered if we would be interested in one of his properties in Downtown Hershey. He said it was a two-unit property (that we could easily convert back into one home eventually) with a tenant upstairs and that the tenant’s rent paid more than half of the mortgage. His asking price was just a bit above the limit we had set, but we knew that with a tenant we could easily make it work.

Remember the quadrant we asked God if we could live in? This house is five houses outside of the boundaries we had set. We couldn’t help but laugh because it was a great reminder that God is in control!

We drove by the property the next day and fell in love – not only with the property but with the location. This was confirmed even in the littlest of details: a red tree in the backyard, hydrangeas in the front yard, a porch swing, and a charming house full of history.

This house was built in 1900 by Mr. Hershey for his supervisors. The entire original town of Hershey was built by him, because he wanted his employees to live in a model town, and he made homeownership a reality for his workers – something that was previously out of reach. We love Mr. and Mrs. Hershey so to live in a home that was built because of them is incredible.

After we closed on our house, we drove straight to Hershey to tour the house and immediately knew this was the house for us. And the process began.

It took (WAY) longer than we expected, but as of today, Brennan and I are homeowners again!



We were allowed to start working on the house prior to closing and we hired our friends, John and Briana, to help us with refinishing the floors, reorganizing the kitchen (read: essentially gutting and repositioning everything), tiling the bathroom, and eventually they will help us remodel the basement and add a bathroom down there. My parents painted the living room, kitchen (including cabinets), and bathroom and were a tremendous help with so many other things during their two week stay.

Here are some before and after pictures of the kitchen (click to enlarge):

The tenant upstairs moved out due to family situations, so we have decided to list the apartment on AirBnB for the summer to test the waters. Given our amazing location, it’s likely that we can bring in more income from AirBnB than by having a tenant, so we’re going to try! Plus, I’ve long wanted to run a “bed and breakfast” so this would be ideal.

We are finally starting to feel settled, and it’s a great feeling to know that we won’t be moving for a VERY long time (Lord willing). ❤ Hershey is now our home.

One Year…


Time is a funny thing. 

Our Tori has been a resident of Heaven for one year as of tomorrow (March 27). It’s surreal, to say the least, to think that we have lived one year without her in our arms. One year without watching her breathe, sleep, and struggle as Krabbe overtook her fragile body. One year since she was healed completely and made whole once again.

Why is it that today, the day before the one year anniversary of Tori’s Heaven-going, my heart feels so heavy? She was gone yesterday, she was gone two months ago; nothing has changed, but for some reason this milestone brings back emotion. This is a rhetorical question, of course. Time is strange in that it heals but it also reminds you of what you once had more strongly as it passes.

We’ve pondered how to spend March 27 for months now, and we came up with an idea last week to return to the Philly Zoo to feed giraffes. However, we won’t be able to do that until April 17, so tomorrow we will celebrate her Heaven-going anniversary by eating fried apples at Cracker Barrel (her favorite!) and remembering her with joy. 

We refuse to sit at home and be sad – that isn’t how we lived life with her and that will not be how we live life without her. We taught her to embrace life and choose to be joyful, and that’s what we will do tomorrow. We remember God’s faithfulness and perfect guidance the ten days before He called her home and are filled with gratitude. 

We miss our baby girl every moment of every day and we anxiously await our someday reunion in Heaven. But, for now, we will continue to live life with passion and joy, just like we did with her here. ❤

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