Headed home!

Today was a good day. 

I was finally well-rested (slept for 10 hours!!) because Brennan “made” me go home to sleep (like I would have said no). So thankful.

I got to the hospital at 9am and Brennan went home soon after that to shower and sleep, since he didn’t sleep well at the hospital.

We both learned how to feed Tori through the G-Tube (also called a Mickey Button). We learned to vent the tube if she has gas in order to burp her that way, and many other tricks.

She slept really well all day and it wasn’t even from pain meds! 

   

                          

The feeds slowly increased all day to ensure that she would tolerate them well. 

At 9pm we fed her 75mL by gravity (as opposed to a pump) and she did well! We signed our discharge papers and headed home!

Pray that she continues to heal well from the surgery and that she will be comfortable. And that she will sleep well. 😉

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In Recovery…

   

Tori’s surgery went well and it took an hour LESS than expected! They were able to do everything laparoscopically so she won’t have any scars.

  

She is now sleeping in her recovery room and we are tempted to sleep as well. 😄 So thankful that she did so well!

   

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“Do you ever tell God that you are angry at him?”

We are asked fairly often if we are angry at God or frustrated with Him.

We can honestly say no. We are not.

Are we curious to know why this is happening? Of course.

Do we have our moments of sorrow and frustration at our circumstances? Definitely.

But anger at God has not been and is not currently something we are experiencing.

God is God and we are not.

“My thoughts are nothing like your thoughts,” says the LORD. “And my ways are far beyond anything you could imagine.” Isaiah 55:8

As I wrote before, we trust God completely and, even though we don’t like what is happening, we know that we will eventually (even if in Heaven) understand why this happened. We know beyond any doubt that He is trustworthy, faithful, and loving.

We know that He will be glorified through her life no matter how long we have her here on earth.

This doesn’t mean that we are “okay” with Tori’s situation, blindly accepting it without emotion. But, it does mean that it’s “okay” in the sense that we know that God is in control, we know that He loves us – and her – and we know that He has an amazing plan for all of our lives. We are unable to comprehend His plan at this moment, but we trust that He has one.

We are filled with His peace that exceeds all that we understand. There is no earthly reason for us to be so at peace with all of this – it is absolutely from God. Being at peace doesn’t mean that we are okay with any of this, but it means that we trust the One who knows all and created all. We trust Him fully with our precious Tori and know that He loves her even more than we do. We know that He eventually uses all things for the good of those who love Him (Romans 8:28).

It is a moment-by-moment process of surrendering all of this to Him and choosing to not worry, to not be angry, and to continue to hope that He will choose to heal her here on earth. He is more than able, and nothing is impossible for Him (Luke 1:37)!

The daily reading for today is from Psalm 66, and it is so fitting for our situation, and for this question:

Psalm 66

Shout joyful praises to God, all the earth!
    Sing about the glory of his name!
    Tell the world how glorious he is.
Say to God, “How awesome are your deeds!
    Your enemies cringe before your mighty power.
Everything on earth will worship you;
    they will sing your praises,
    shouting your name in glorious songs.” 

Come and see what our God has done,
    what awesome miracles he performs for people!
He made a dry path through the Red Sea,[a]
    and his people went across on foot.
    There we rejoiced in him.
For by his great power he rules forever.
    He watches every movement of the nations;
    let no rebel rise in defiance. Interlude

Let the whole world bless our God
    and loudly sing his praises.
Our lives are in his hands,
    and he keeps our feet from stumbling.
10 You have tested us, O God;
    you have purified us like silver.
11 You captured us in your net
    and laid the burden of slavery on our backs.
12 Then you put a leader over us.[b]
    We went through fire and flood,
    but you brought us to a place of great abundance.

13 Now I come to your Temple with burnt offerings
    to fulfill the vows I made to you—
14 yes, the sacred vows that I made
    when I was in deep trouble.
15 That is why I am sacrificing burnt offerings to you—
    the best of my rams as a pleasing aroma,
    and a sacrifice of bulls and male goats. Interlude

16 Come and listen, all you who fear God,
    and I will tell you what he did for me.
17 For I cried out to him for help,
    praising him as I spoke.
18 If I had not confessed the sin in my heart,
    the Lord would not have listened.
19 But God did listen!
    He paid attention to my prayer.
20 Praise God, who did not ignore my prayer
    or withdraw his unfailing love from me.

Praise God who does not ignore our prayers or withdraw His unfailing love from us.

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Surgery Day

We arrived at the hospital at 6:00am to check in for Tori’s surgery.

She was very calm and patient despite being hungry and tired.

She was taken back around 7:30am for the operation, which should be laparoscopic.

It should last about 3 hours total in the operating room. 

   

Here are some pictures from this morning, for those not on Facebook or Instagram.

Please pray that all goes well!

   

 

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Update on Feedings and Surgery

We were told yesterday that Tori’s g-tube/Nissen surgery will be at 8am on Monday in Hershey. We will arrive at 6am.

Poor Tori has been throwing up most of her feeds in the past few days, which is obviously not good for her (or for our laundry pile 😉 haha).

  

To try to help Tori tolerate her feeds this weekend, we decided to slow down her feeds from 3.5oz over 30 minutes to 3.5oz over 60 minutes. 

It has mostly worked thus far. She just threw up on me as I was typing.

Of course, this means that eight hours a day will be spent holding and feeding her until Monday, but she needs the calories and hydration!

Also, she has been coughing occasionally (not consistently at all), so we are praying she isn’t getting sick (it would be the first time ever). If she is sick, no surgery on Monday. I think it is just from her drooling so much when she sucks on her pacifier. 😄

Thank you all for your continued prayer and support! We still absolutely believe that God can heal her and are praying that He will.

For those not on Facebook, here are some pictures from the week:

   

                                 

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What TO say and do for parents of terminally-ill children…

My friend Sharon has been living with chronically-ill children for eighteen years now. She, more than anyone I personally know, can completely relate to our situation, and she offered the following advice to me right after Tori was diagnosed. I read it again last night and realized just how right she is.

Since so many ask how they can help parents like us, I wanted to share her wisdom. We are so thankful for the support and help we have received from family, friends, and even strangers!

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Support is important, but the one thing I personally hate is pity – PLEASE do not pity someone – please do not. Feel the hurt that they feel, feel the pain that they feel;  but, my son is still my son — I would never give him back.  I have had him for almost 18 years – others I know (unfortunately too many to name) have lost their kids before they reached 18 – BUT they loved every minute of it .

Now – WHAT can you do – or what helps?

1. Extended family and friends play an important and big role in helping children and their immediate families deal with a serious illness.

2. Listen, really listen, to your friend or family member. It’s important for people to tell their story – it helps with processing traumatic situations. So let them talk. Be a good listener. Even if you have no clue about the medical terms they are throwing around – feel free to ask.

3. Send meals. Remember that while they’re in hospitals, the food they have available is usually not great OR healthy. Try to plan for fresh foods, easy to heat up, easy to clean up or have something delivered, like pizza or Chinese.

4. Offer to babysit other children during appointments or accompany them to the appointment if they need someone to sit with them. 

5. Be available to help out in the middle of the night for ER trips and other emergencies.

6. Everyone wants to help immediately, but in a long-term illness, help will be needed for the long term. People get burned out easily so spread out the help so you can be strong for them. Remember, she will still need you in a month, three months, six months, even next year.

7. Offer (don’t just do it) to do things for them that require clearer thinking: contacting school or work, or other friends and family, etc.

8. Offer to be the person to gather mail (either at their house or set up a post office box if they want to keep their address private) and deliver it to them.

9. Use common sense when visiting. If you’ve been sick or feel like you’re getting sick, stay away. If your kid’s been sick, stay away. Your germs can make a compromised child VERY ill.

10. Help set up a notebook/Binder/flash drive to keep important medical information in or scan them for her and put them in a file or flash drive (I do this). A copy of all the paperwork from discharges, diagnoses, medication changes is so helpful and can be taken to all appointments or travels. If they’re out of town and have to go to an ER or urgent care, they have all the information handy and treatment is easier and safer.

11. Research and summarize disease information available on support group websites or ask questions to which you do not know the answers.

12.Be calm and levelheaded for your friend, as at times they will not be able to think clearly, be it from being stressed or overtired…It is okay to be upset, but it helps them for you to be logical, orderly and levelheaded. It’s calming to them and helps them see things that they may not see with everything going on.

13. Offer to pick up medication at the pharmacy while you’re out. If you’re heading to the grocery store, call before and see if they need anything.

14. Gather folks to help clean and disinfect their home before they come home from the hospital, especially if there’s been surgery.

15. Offer to do an overnight stay and let them get some uninterrupted nighttime sleep. Sleeping in the day is fine, but there’s nothing quite like a good 6 hour stretch in the night to make a parent refreshed.

16. Make a gift bag of Lysol, Clorox, wipes, masks for the kid when in public, soaps, and hand sanitizer. When dealing with sick kids, you HAVE to be ultra clean all the time. A cold to you could mean death to a child with compromised immunity.

17. Offer to help with the household chores or pet care. Offer to pay for a cleaning service or dog sitter/walker.

18. Be willing to just sit in the waiting room with your friend. Just having another person present can be a huge stress reliever.

19. If you’re not local and want to help, gift cards are a great idea. Visa or AMEX gift cards can be used almost anywhere and are a good choice if you’re unsure of what stores are local. Starbucks/gas cards/Target/Walmart are also good bets. Mobile gift cards for apps on an iPad or iPod are good, too. If the kid is older, a basket of puzzles, word games, etc.

20. Cards. notes, are wonderful.  The person does not need to respond but they know you are thinking of them. A good gift is a pretty box or basket to keep the cards in. 

21. AND FINALLY, be there for the long term – not just now but several months and years – she will still need support then.

Now here are some thing that should not be done – my pet peeves. I know so many mean well – but try to avoid doing these things.

1. Remember that your friendship and support really matters – it may be a lifeline for your loved one. So, if you say you’re going to help, commit to it. Having someone back out when your child is sick can be more devastating than you can imagine (trust me, I know this all too well first hand – I lost way too many friends and learned who my “real” friends truly were).

2. Don’t visit without checking first, even if it’s something you’ve planned with them in advance. One rough night can lead to a day of exhaustion for everyone, and they might not be up to visitors.

3. Don’t visit if you’ve recently been sick, feel like you may be getting sick, or your child has been sick. Your germs can make someone with a weakened immune system very ill.

4. Don’t prolong the visit. Watch for cues from the parent or the child that it’s time to wrap things up.

5. Don’t say, “God won’t give you more than you can handle.” It implies that God had a role in the child becoming ill and may make your friend feel as though he or she is being punished. To be honest, this is a big one for me and I still have a hard time dealing with it. It does make one feel like you are being punished.

6. Do not send latex balloons to the hospital. Many people are allergic to the latex in balloons and almost all children’s hospitals are latex free – I know 2 of my boys are allergic to it.

7. Avoid sending flowers. Sure, they’re pretty, but the child won’t care. Worse, if the child’s immune system has been compromised, anything that could cause an allergic reaction or carries bacteria could be life-threatening.

8. Don’t take it personally if your friend doesn’t want to talk. The stress of being a caregiver is overwhelming. Sometimes the best thing to do is just sit there with your friend and let her vent, cry or just sit in silence. Often your presence is enough.

9. Don’t be afraid to reach out with thoughtful phone calls or e-mails, but remember the family is likely overwhelmed and may not be able to respond. But know the thought is appreciated.

10. Don’t give medical advice. You’re not a doctor and you’re certainly not familiar enough with the child’s illness to be making medical calls. Unless you have a chronically ill child you do not know how the parent is feeling. Unless you have been in the parents shoes do not say I know how you feel, as trust me, you do not.

11. Don’t tell them to “chin up” or “cheer up.” They are entitled to their feelings, which may or may not be comfortable for you.

12. Don’t tell horror stories and don’t compare your friend’s child to another who was seriously ill, too. It won’t make anyone feel better. Do not try to compare your child having tubes in his ears or the flu to an incurable disease. Sorry, but things like this will make me (or others) want to strangle you.

13. Unless your child has the exact same diagnosis or has had the same surgery or the like, DO NOT offer unsolicited medical advice.  

14. Do not offer unproven medical advice or opinions.  Do not say “if you do this it will cure your child! I know a parent whose kid was cured of cancer using this herb…” It is not helpful. The best advice you can give is offer to pray or help.

15. The phrases below are not cool. Don’t use ‘em. Don’t say:

• “I know JUST how you feel.” (no, you don’t – unless you are in the same boat and, even then, EVERY child is different.)

• “I feel helpless.” (Imagine how your friend feels – exactly – rather be there)

• “You need to talk about it.” (NO I don’t – if we want to talk we will)

• “Here! This is what you should do. I heard about it on Oprah, Dr. Oz, the Doctors.” (who cares what they have to say? They are not my child’s doctor.)

• “I don’t know how you’re managing it all. I’d die if it were me.” (thoughtless! Again, it does not help. No, you would not die and yes, you would be able to deal – it is your child you would love them.  Just because my child has an incurable disease does not mean I love them any less – to be honest, I treasure every minute I am given with them.)

• “Everything is going to be fine.” (you do not know that – and usually not true.)

• “What’s the life expectancy with that?” (morbid! – yes, I may strangle you if you say this.)

Now what should you say instead:

• “Do you need to talk/feel like talking? I’m here to listen.” (doesn’t pressure them to talk right then, but the offer is there – often I would open up after a while. The parent needs to learn who is paying lip service and who really does care what happens to their child.

• How are you/child feeling today?” (since every day is different – and yes, things can change on a daily or hourly basis. As long as you are being sincere this is perfect and simple to do.

• Ask about the disease or diagnosis and maybe look it up so you know more – BUT, do not offer suggestions for treatment. Ask questions, remember the major issues and look them up.

• Talk about care and hope. Talk about how sweet and precious their child is and how much your love them. You should validate the seriousness of the illness by confirming that they are facing something very difficult.

• ” I am heartbroken you and your baby are going through this. Hang in there and know there are so many people who care about you.” Acknowledge that you know your friend is in pain without saying you understand what she is going through.

• Ask the parents how they are doing. After you ask “How are you?” and they respond “I’m fine.” – wait for the truth after they say that. I can tell if you really want to know how I am doing – like I am about to have a break down, or I want to cry or I want to go back in time, etc.

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Thank you, Sharon, for allowing me to share this here! I know it will help so many people!

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What NOT to Say…

When we made Tori’s story public we expected to hear from people genuinely trying to help save her life. We have greatly appreciated the time and energy people have put into trying to help her, and us!

However, we have also received messages and comments from people who clearly haven’t researched Krabbe and are merely trying to push their own beliefs and platforms on us. There is a huge difference between the two, and it is always obvious which camp the person commenting is in.

Below is an email we received yesterday from a woman who claims to be a health and wellness coach on her Facebook page. She has stated in the past that she believes that things like ranch dressing cause cancer, to give you an idea of her beliefs. She is part of a Facebook community that I am also involved in, and that is how she heard about Tori. She doesn’t like to be confronted and always deletes comments from people questioning her “facts” with actual research. She strongly believes what she preaches but is apparently very insecure when questioned.

This is an example of what NOT to say to a family that has a dying child. I included my responses as well to paint the entire picture.

NOTE: this post is not to stir up a debate about vaccines. Please do not comment with your opinion about them as it is completely irrelevant to Krabbe and it isn’t the point of this post at all. :)

Hi Lesa,

I’ve been thinking of you and your family. How is Tori doing? And yourself?

I wanted to get in touch with you as I find out the resource I had for you never got in touch with you. I am sorry.

When I first read of Tori’s story I immediately sensed why she had the reaction she did. To confirm, she had these problems right after vaccinations, correct?

The toxins that are in the vaccines include aborted fetuses, heavy metals, and a host of other things that God never intended our bodies to have. Vaccine injury is very real and to date the US gov has paid out over $3 Billion to families.

Here are some resources to get you started in the healing process of Tori and your family:

I highly recommend that you start a vaccine detox with Tori to help her body get rid of the toxins. 
(Links omitted)

Please let me know what questions you have and how I can support you in Tori’s healing and in discovering the truth. 

It is apparent that this woman has not actually been following Tori’s story or diagnosis at all. So, the fact that she wrote to us with those suggestions was not helpful or welcomed. But, I decided to still answer with grace.

I kindly responded to her email:

Thank you for sharing your thoughts and resources! 

Unfortunately, Tori has Krabbe Leukodystrophy – a genetic disease. Brennan and I both carry a recessive gene for the disease (we now know) and unfortunately Tori inherited both recessive genes. 

Krabbe destroys the central and peripheral nervous systems because the body doesn’t produce the GALC enzyme. 

I wish it were as simple as a vaccine. We are pro-vaccinations and believe they do more good than harm. Her shots had nothing to do with her genetic makeup, so without a miraculous healing from God Himself, she isn’t going to live past the age of 2 years. 

For more information on this terrible disease you can see http://www.huntershope.orgor http://judsonslegacy.org/krabbe-disease 

Thank you for your concern! If you want to keep up with Tori, I have been blogging extensively about it at https://thebrackbills.wordpress.com and her Facebook page is http://www.facebook.com/prayingforTori

Her only response?

Even though they contain aborted babies?

 I thought for a long while about how to reply because I wanted to be kind:

With all due respect, I have never seen a legitimate source write about vaccines containing aborted fetuses. And, if it is true, it’s not like they aborted the babies just to make the vaccines. If anything, that aborted fetus is saving lives by being in that vaccine, which takes a horrible act and brings good from it in a way…if it is even true.

But, that isn’t what this is all about. Our baby is dying (and suffering in the process) and right now I honestly couldn’t care less about the vaccine debate. What I care about is getting legislation passed in each state to ensure that every newborn is tested at birth for Krabbe so that no more babies lose their lives to this horrific disease.
If the issue had been left there, I wouldn’t have minded. However, she posted the following status on her PUBLIC page not long after this conversation happened:
IMG_9894I was stunned when I saw this. The timing of it made it impossible to believe that it could be about anything – or anyone – else. I commented on her status asking if she was writing in reference to me, and she promptly deleted my comment (and the ones from other friends of mine who saw the post) and then deleted the post and blocked all of us.
The whole situation made me laugh, honestly. Yes, I was annoyed when I saw her status about us. How anyone could say something like that, claiming that we aren’t doing everything we can to save our child’s life, is unbelievable. But, more than anything, I feel sorry for this woman. She is so misguided and her Facebook page is filled with ridiculous health claims. She doesn’t appear to have any credentials or health education, yet she is offering health claims and advice to the public as a business. Sigh.
Krabbe is genetic. Nothing we did caused it. Vaccines sure didn’t. In fact, vaccines are highly recommended for Krabbe babies.
Moral of the story: Don’t say that parents of a dying child are not trying to save their child’s life. Don’t offer advice without researching the disease. It isn’t helpful, it hurts feelings, and it wastes precious time.
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Raising a Girl



I had always imagined having boys when I thought about our future children and I felt comfortable with that idea. We even had a boy name picked out pretty early during pregnancy!



Every single “test” we had tried (for fun, not because we put any stock in them) said we were having a boy. Even the “Ajax Test” which my Aunt Becky said has always been right! 😉

So, imagine our shock (one year ago today) to find out during our ultrasound that we were having a girl!



It took me many weeks to get used to the idea of having a girl, and I honestly wasn’t excited. It took me just as long to figure out why.

I started to write the following blog post nearly a year ago and never finished, but I felt that it was worth sharing today.

I read a couple of quotes a month or so ago that go through my mind just about every day now as I am preparing to bring a child into this world:

“Beyond what we could ever say to our children, the greatest teaching tool we have is the example of our own lives. – James Robison 

“Are you the adult that you want your child to grow up to be?” 

I never imagined myself raising a daughter, so despite the fact that we’ve known for almost six weeks that our little baby is a girl, it’s still such a strange thought for me. 

It took me awhile to figure out the reason, but I think I know what it is: 

I am intimidated at the thought of raising a daughter in today’s world. I am nervous about being the adult that I want her to grow up to be because I am so very aware of my own faults, failures, weaknesses, etc.  and I question my ability to parent her well.

I think I wanted boys because, subconsciously, I figured Brennan would have a lot of influence on boys and assumed they would look to him more than to me for an example. Yes, I would have influence, but they would look to him for an example of what a godly man looks like, just like girls would look to me.

Now that I have a girl, I am so thankful. Tori has been such a joy since day one and I am so in love with her. She is beautiful and so sweet! 

I no longer feel fearful of raising her; I am more fearful that I won’t have the opportunity.

God has shown me in the past seven months that I am capable of raising a girl because He is my guide.  He is my source of strength and wisdom. 

For I can do everything through Christ, who gives me strength. (‭Philippians‬ ‭4‬:‭13‬ NLT)

Even though Tori is still a baby, God has already used her to bring change to my life and I can’t wait to see how He continues to use her.

Though I never had imagined having a daughter, now I truly cannot imagine my life without Tori, which drives me to prayer even more. 

Lord, please let us keep her…but, may Your will be done, no matter the outcome.

Team Tori on Facebook


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A Good Friday, For Once

Fridays haven’t been kind to us in the past two months. 

Tori was given a non-specific leukodystrophy diagnosis on a Friday. 

Tori was admitted to the hospital on that same Friday. 

Tori received her Krabbe diagnosis on the following Friday.

We were told that Tori was already in stage three of Krabbe the Friday after that.

We’ve had a lot of really bad Fridays in 2015 thus far.

Yesterday, however, Fridays were redeemed for us.

Brennan had the day off and we were able to spend the day together thanks to two wonderful friends who not only came to our home to watch Tori, but to do some cleaning as well. We have been blessed beyond measure by our friends and family, and this was a huge example of that.

We went to the chiropractor for much-needed adjustments and then decided to have lunch at The Chocolate Avenue Grill in Hershey.





We enjoyed our conversation and we managed to speak about things other than Tori for once. That has been difficult lately as you can probably imagine.

I wore my Team Tori scarf (from Picket Fence Creations) for the first time!



When it came time to pay our bill, the waitress came over and told us that another table (whose members had already left) had paid our bill. We owed nothing.

When we opened up the folder to see the receipt, there was a note inside.



We were both in shock, not only because this has never happened to us, but because the women at that table clearly know who Tori is. Who we are. 

It wasn’t that we had shared our story with them over lunch or anything like that. We assume that they must be following Team Tori on Facebook and recognized us from there. 

If you are reading this blog right now and happen to be one of the ladies who paid for our lunch and left us this note, please know that you made our day. Both of us were trying not to cry at that moment. Your kindness and prayers mean so much!

We then ran a few errands and went back home. My sister Cheyenne arrived just in time to head to Palmyra for a fundraiser that some of our friends so lovingly put together for us. 

Tori did SO well in the car both ways! Praise the Lord for that. 



We arrived twenty minutes after the event began and the parking lot was packed. When we walked inside, we were amazed at how many people were there!





Tori slept through most of the event in Aunt Cheyenne’s arms 😄❤️

They had a silent auction, baked goods and other delicious food, chair massage, vendors, and more.





So many Team Tori members were there and it was SO wonderful to meet so many people who love Tori and are praying for her. Even though I am an introvert, I still enjoyed all of the conversations! 😉❤️ The grandmother of the other precious girl who had Krabbe in our township came by and it was an honor to meet her and speak with her. I’m sure it won’t be the last time we meet.

At the end it was announced that over $3,500 was raised for Tori! Incredible. 

We cannot thank you all enough for helping us through this ordeal spiritually (by praying and encouraging), emotionally (through your support and love), physically (by feeding us), and financially (by so generously donating to help us care for Tori). We love you all more than we can express!





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Tori in the News

A reporter came over today to talk to me (Brennan was at work) about Tori and Krabbe.



You can read the article here.

We are so thankful that the word about Krabbe is spreading. Tori is the second baby (that we know of) in our township to be diagnosed with Krabbe, and that is remarkable given the rare likelihood of inheriting the disease.

If you live in the area, a really fun event/fundraiser is happening tomorrow night in Palmyra and the info can be found at the bottom of the article.

Team Tori on Facebook

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