The neurologist called today and said they had the blood test results already, and asked if we could come in at 2pm. We knew then that it was either great or terrible news.
There is no question that Tori has Infantile Krabbe’s (crab-bay) Disease. The average life expectancy is two years. There is no cure.
Today we were told that our baby girl is dying.
There are so many thoughts in my mind right now: wishes that Pennsylvania had tested for this at birth, which would have given her a chance for treatment; hope that God will still indeed heal her, especially since there is essentially no hope medically; numbness at this news that our long-awaited baby girl will not be on this earth much longer without a miracle straight from God Himself; the calling I know God placed on my life to be a stay-at-home mom and pleading with Him to not take her (and the hope of future children) away.
Brennan and I will be undergoing genetic testing next week to determine which genetic mutation we carry. This will help us make decisions about future children.
Please continue to pray for us during this time. We know that God is in control, and we will praise Him no matter how difficult it may be to do so.
Even So, Joy 
we love you. we pray with you. we believe with you. And we will continue to life your family up when you’re feeling too weak to do the same.
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I’m so sorry
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PrayIng, praying!
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I will continuously pray for your miracle.
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I am so so sorry. I will continue to pray for a miracle!
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As I sit here holding my 4 month old baby boy, I cannot fathom the pain and sorrow you and your family are experiencing. My mommy heart aches for you. I will continue to pray for healing and strength for Tori and all that surrounds her.
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I am so sorry to hear this news. I know it was not what you wanted to receive when you went to the doctor today. I am continuing to pray for you all – for complete healing for Tori and for peace and comfort for you and Brennan.
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sending love and prayers…
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Praying for you. Our church is praying. I will have my extended family pray.
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I am sitting here crying for you. I am so sorry and I will be praying.
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Crying with you, Lesa. And praying.
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I will continue to pray for you and your family. It is heartbreaking to read this happening to you. If God has chosen you to be Tori’s mom even for such a short time, what an honor. I know that means that God believes that you have the strength, love and hope to care for this child from your arms to His. The journey will not be easy and many of us will be here with a shoulder and heart to cry on when you need it. I would encourage you to reach out to a friend of mine in NY, Erin Musto (Maddie’s Mark), she has many great resources that you may be able to draw knowledge and strength from. I will add you to my daily prayer list, and while we may have never of meant in person, your are my sister in Christ and I am here for you. Love to your family!
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Praying for you…God is our Healer, our Jehovah Rapha….and once again…the wisdom of the world is foolishness to God. Asking for healing so that the world may know that our God is the author and sustainer of all life.
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My heart is broken for your family. I cant say how you feel because I don’t. But we lossed a grandson at four months from what the Drs thought was a common cold.That was 3 years ago and there is not a day goes by that you don’t remember the healthy child. God be with you and he still is the great healer here or in Heaven.
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i had to hear those words i have felt that emptiness u will feel .the hurt the questions why my baby i pray to god he gives u the strength u will need take it day by day and cherish every second and dont lose ur faith
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I know you’re devastated right now and likely overwhelmed as well, but here is a place to start to look for more information and possibly help http://www.huntershope.org/site/PageServer?pagename=aboutus
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This must be so hard to go through. Our hearts hurt with you. Lifting you and little Tori up to the Father!
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I’m so sorry that you are going through this storm, I want to share my very recent praise report to lift you up. I will make a long story short…last June I noticed my sons posture was not right, took him to doctors and he had a 30% curve in his spine! they do surgery at 40%. I took a picture of his x-Ray and began praying over it, commanding his spine to line up with the word of God, I also annointed him immediately with oil and broke off the negative words spoke over him, saying he has scoliosis . It took 6 months to get in with the pediatric specialist, I prayed and ask The Lord for healing and that he would not have to be braced. dec 29 we finally saw the specialist and he sent Gavin for another X-ray because he said that there should be a lump in his back when bending forward, the doctor was confused, he didn’t know I had already been seeing the specialist. When he put the radiograph on the screen his words were ” mom, I don’t know what your doing but keep it up, the curve went from 30% to 16% I want to see him in June and I’m not going to brace him” Amen, God is healing him and will continue to do so…..Be encouraged, look through what you see to what God says about Tori…By HIS stripes Tori is healed. Play healing scriptures over her, speak life into her life and let His word become real, standing with you …Mary (met you at coffee shop, with nancy) can’t wait to hear TorI testimony……
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Hello! I’ve been seeing my sister-in-law Ally Muller post your constant updates and although I haven’t been following closely I felt the need to reach out. God has it heavy on my heart to see childhood diseases abolished in Jesus name, everything to leukemia, cancer, epilepsy, or autism. And your babies story is no different. I am praying knowing God is in charge and wants the best as a Good Father. He is only ever Good. I also wanted to reach out and let you know of a ministry where I am from in California that does Skype sessions for their church-based healing rooms. My roommate personally volunteers for this service and comes home every week telling me about fingers growing out, chronic disease leaving, and even once there was a baby that came back to life…nothing is impossible with our Lord. Come with anticipation of His goodness, and He’ll meet you more than halfway. http://bethelredding.com/ministries/healing-rooms/skype.
What you will find are genuine people who genuinely love people. This is not a business or a scam and costs nothing, so you have nothing to lose. Follow the link and check out the next Saturday that works for you. This is not the end of your babies life. This is only the beginning. We believe in full healing and restoration through God’s creative miracles. No matter what you believe about Holy Spirit or modern day healing’s, what you will surely encounter is God love, peace, and hope.
I am declaring hope over you and your husband. Your extended family, and peace into your minds as well. You are so very strong. Declaring perfect health over your baby Tori as well. In Jesus name.
Here are some worship songs to just inundate yourself with to speak truth over your mind:
It is well / Kristene DeMarco
Ever be / Kalley Heiligenthal
We will not be shaken / Bethel Music
You make me brave / Amanda Cook
Constant One / Steffany Grettzinger
Good Good Father / Bethel Music
Blessings ❤
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I am from a small town near Redding, actually. Thank you ❤️
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Tori has absolutely amazing, godly parents. We do not know why sometimes. Sometimes it is not ours to know. Our hearts are so heavy for you both. May God, in is promised provision comfort you, guide you, hold you as the Holy Spirit interceed on behalf of Tori. Tori’s life has meaning and this is to glorify God. She is a special, special child of the King with humble parents who depend on the Lord each step of the way. So many people, including me wish that this was not happening. It is in times like these that we need our faith more than ever as sometimes that is all we have to hold onto. God will never leave nor forsake. He has promised and He never breaks His promises.
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Heartbroken. As the mother of two children in Heaven, my heart weeps with you. I have never been closer to God than when my daughter was born and then in the time of terrible grief afterwards. Praying for a miracle with you.
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Lisa and Brennan, I will keep praying for you and Tori every day.
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Oh, so sorry. I can’t imagine losing one of my babies. You will be rewarded for your faithfulness. There will be times you will feel everything – and it is okay. Be anger sometimes, be sad, be tired, be hopeful, be joyful, be full of love. In all, trust God. We can’t always undestand His will, but we can trust it. Deepest sympathies. Give her a lifetime of love in the time you have left. You are a wonderful mother; she knows that.
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Praying for you and your family during this very difficult time. Praying for a miracle!
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God bless & heal your sweet baby girl ❤
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Lesa & Brennan. My heart is broken for you. I am continuing to lift you and your precious Tori to the Lord. I cannot imagine the heartache you’re feeling today. Know that you are loved, you are precious, and your sweet family is in the prayers and hearts of so many.
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Will be praying for a miracle. God is good and His way is the best. Your faith and trust in Him by being thankful in all things is an amazing testimony. God bless.
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I’m so sorry to hear of your difficult time. I can’t imagine what you must be going through, but I know that the Lord is with you. I’d like to introduce you to my friend Molly Monroe. She lost her 7 month old son last fall, and if nothing else, I pray that you can find encouragement and strength in her words. God bless you. http://www.mollymonroe.com/
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Father God, in Psalm 107:20, you said you sent your word and healed us. You spoke this in the past tense, as an event that has already occurred. Isaiah 53:7 tells us that Jesus bore our sicknesses and our diseases to the cross. You are Jehovah Rapha… our healer. Jesus told us in Matthew 19:26 that all things are possible with you. I come to you wearing the full armor of God as described in Ephesians 6. I know that no weapons formed against us can prosper. We stand firmly on the promises in your word, Father God. Disease has no right in this child. Heartbreak has no right in this family. 1 Peter 2:24 tells us that by the stripes of Jesus, we are healed. I claim this promise for Tori, Father. In John 16:23, Jesus told us that whatever we asked you in his name, you would do. We come boldly before your throne, Father, and ask that Tori’s healing be swift and complete, that the doctor’s will be surprised and amazed, and that this will bring glory to your name. We pray this knowing that you watch over your word to perform it, and it cannot return void, in the name of Jesus. Amen.
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Found you via dreamers and builders. You are an incredible writer, it makes it easy to follow your journey. Sometimes life really sucks and I don’t understand God. I guess it is not for me to understand, I just have to pray. For y’all. I believe in miracles and just know you have people behind you. XO Ashley
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Praying for healing, comfort and acceptance of God’s will. Bless you all in the name of Jesus Christ our savior.
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Cannot put into words the sadness I feel for Tori and all of you.All I can do is pray for all of you.Just in case you don’t know who I am I am Matt Lindsey’s grandmother.My heart is full of sadness for Tori and all of you for what you are going thru,but I am praying for a miracle.
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Continuing to pray for all of you.
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This is so sad. We will continually pray for you all.
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I am so sorry that you have to digest the words the Doctor has given you today…holding you and your beautiful family in my heart, wishing only to share and lessen your painful sorrow….there are no more words only prayer.
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Praying for your family! ❤
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Lesa &Brennan. I have no words to express how I feel. But know God is in Control, whatever His will is. So thankful you both are strong Christians and relay upon the strength of our Lord. Love you and pray that God will be glorified whatever He decides. Sending hugs and prayers.
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I cannot imagine having to hear the words you had to hear from your doctor. And now, having to face and live out the days ahead. May God orchestrate divine events so that you know, without a doubt, that He is working out His plan for your family in a way that gives you certainty of His love and faithfulness to you. May He shine His light through little Tori, and God willing, touch her with a miracle.
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Praying for you, your husband, and most especially little Tori. Praying for miracles.
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Thank you for so courageously sharing your pain with us. We continue to walk and pray with you and pray for God’s mercy for Tori. Our only solace may be in knowing that He will heal her beyond our wildest dreams when He takes her home, and that you will one day see that for yourselves.
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I know you may think this is CRAZY and everything is a whirlwind right now but please, please, please take a look at Stem Cells (out of the US of course)!!! We have a son with Spina Bifida (yes, a completely different case but still Neurological) and took him to Mexico for a Stem Cell Treatment and it has made a WORLD OF A DIFFERENCE! I would LOVE to talk with you about the opportunities that may help your little girl LIVE!
My e-mail is rik4zmn@comcast.net. Please send me a e-mail and we will arrange a time to talk.
God Bless!
Rik Foresman
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My family and I will continue to pray for Tori’s healing and strength for you and your family at this extremely difficult time.
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Praying that You feel God’s peace and love. We’re praying for your beautiful family!
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I am a senior in college, and though the motherhood season of my life seems to be so far off, i too have had a calling and strong strong desire to be a stay at home mom one day if God so blesses me with the chance. My heart breaks for you tonight as i’ve gone back and read your whole story. You, your husband and Tori are all brave beyond words. I am praying fiercely for Tori and for Gods will and purpose to be made clear to you and your husband during such a horrific and confusing time. God bless
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Continuing to pray for a miracle for Tori, and strength and comfort for you all. I cannot imagine the pain you are going through. God bless you!
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She has the most beautiful eyes I have ever seen. She is in Heaven now. Love her forever.
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My heart aches for you, Brennan and sweet Tori. I will lift you all up in prayer – our God is miraculous and I pray that we will see a miracle in the full restoration of Tori’s health. God Bless all of you, and though it is probably incredibly difficult, thank you for sharing your story. Much love to each of you 💜
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Please know that our family is lifting you up in prayer. Your attitude and continuous praise to our Heavenly Father is awesome. Praying for a miracle.
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Oh, that’s so hard, Lesa. Praying for all of you.
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Just want you to know we got your information from Aaron Kelly’s website. We have been following your blog now and pray daily and will continue to do so. We pray for peace and think of Casting Crown’s song, “Praise You in this Storm” and “Blessings” by Laura Story which have carried us through many difficult times.
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My thoughts and prayers are with all of you!! Prayers for a miracle!!! I’m sorry that you had to endure such horrible news, I can’t even pretend to imagine what you must be going through!
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Oh my dearest Lisa, my heart breaks for you and your husband, I feel the pain you both are enduring. I say these things because I too went through a similar situation with my daughter. We, my husband & I, have an Angel in heaven now. God’s plan for his children is not always what we want here in the physical world. One thing I have learned over the years is, prayer can heal. I wish I could hug you all right now, but remember my family and I will keep you in our prayers.
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I am heartbroken for you all. Courtney Zeppuhar, my daughter, has kept me posted .I have been reading your blogs as well. I am an RN, and I know the heartache patients and families go through. I do not understand why GOD is putting you through this terrible time, but I know GOD is in control. I also personally know that GOD answers prayers. Less, You and Brennan and Tori are in our prayers. Mountain view Bible Church in Hummelstown has you on their prayer list as well.
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Can’t imagine this pain. Forgive me & everyone who doesn’t know what to say other than praying fervently for a miracle for you & this precious, beautiful baby girl.
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by law they should have tested her for that at birth. it’s called Hannah’s law.
http://www.legis.state.pa.us/cfdocs/billinfo/billinfo.cfm?sYear=2013&sInd=0&body=H&type=B&bn=1654
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She was born in July. It was passed in October.
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I will keep your sweet girl and your family in my prayers! I know the amazing power of prayer!
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Praying for your family this morning. we don’t always understand Why this is going on. comfort each other and take care of no Tori as best you can praise God for everything no matter how difficult it gets.
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Lesa & Brennan, Last night in our home fellowship group I asked that we all agree together in Prayer for the miracle healing of Tori. One of the men in our group prayed,”That the Lord knows this little girl Tori, is not Tori, or Victoria but she is Victorious, a Victor in Christ. Knowing full well that God has much more for store for her. That the Lord is a Lord of Love, a Lord of Healing and there is nothing that He cannot provide. That it breaks his heart when one of these little ones are hurting.” This prayer brought tears to not only all of our eyes, but to all of our hearts. We stand with you in this request for a Victorious Hallelujah in the Lord.
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Heartbreaking news, but at the same time, out of all the people in the whole world, God chose you two to be the parents of Tori. You must be a special couple to be so blessed by such a beautiful little girl.
“Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.” (James 1:17)
I am not an advocate of positive speaking just for feeling good’s sake, but I am a follower of an awesome, loving Father who allows nothing to happen by accident to His children. He must have a great plan for Tori and you. Seek His plan, walk in it, and we the Body of Christ will be blessed and enriched by the testimony of God’s faithfulness to your family. God bless you.
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Check your message box- others part on your Fb. Thinking of your family.
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I’m follow Addilyns Journey of Hope. It’s a little girl who has this same disease. I believe she lives in Maine. I’m so sorry to hear your news. I can’t even begin to know what you’re going thru. Stay strong. Leave this to God. Praying for you n your Family.
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Just offering love and support, from one parent to another. I know God has a special plan for your sweet girl – love radiates through her. You can see it in her eyes. I pray for a miracle!
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Praying!
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My heart breaks for you. Praying for that miracle. God is the only One who is able to provide it! Keep the faith.
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I was very touched by your story, and seeing the pictures of your beautiful daughter is just heart-breaking. Unlike most of your commentators, I am an atheist, but I feel so strongly for you on a completely human level, and as a mother as well. I send you much love, hope and compassion – your daughter looks so amazing and beautiful and I hope that the wonderful times that you have had and continue to have with her stay in your heart always and forever. Much love.
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My heart breaks for your family, my prayers are for your family.i know the pain that you are facing all to well it’s been 36 years since I buried my daughter, the pain at first is almost unbearable put with Gods grace your get stronger a little everyday until it’s just a dull ache every once and awhile.but cherish everyday that you have left with Tori.
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