Pittsburgh, Day Two

We had originally planned to just stay inside the hotel since they hadn’t scheduled anything for us today. Given the temperature outside, that was desirable. However, they were unable to do some of the evaluations yesterday so we came back today.


The morning started with a meeting with Dr. Escolar, where she went over the MRI findings as well as the genetics behind this disease. She is a wonderful teacher and definitely an expert in this disease.

Their website is here: http://www.chp.edu/CHP/neurodevelopment+in+rare+disorders

Starting with the genetics, Brennan and I basically had the same odds as winning the lottery in giving these specific gene mutations to Tori. Maybe we should buy a ticket (kidding).

Essentially, she is almost certain (before we even do our blood testing) that we both carry a recessive gene mutation that came together when Tori was being formed. Our full siblings are almost guaranteed to have the same mutation. Just because babies don’t show symptoms doesn’t mean they won’t end up with late or adult onset. Of course, there is a 25% chance of our babies being born perfectly healthy and a 25% chance that they will be a carrier of the gene.

She recommended that our family members be tested before having children.


Then she told us what she saw on the MRI and the spinal tap. Tori is beginning stage 3 (of 4) of Early-Infantile Onset Krabbe. Stage 4 will begin in months, not years. She explained what will start to happen, but I can’t remember everything that she said. It was a lot to take in.

Tori is not a stem cell transplant candidate because of how advanced the disease is already. Dr. Escolar said that the process of the transplant (chemo, etc.) would actually accelerate the disease.

In short, only an act of God Himself can save Tori.

From this point on, we will be trying to make her as comfortable as possible while the disease takes its toll.

In the afternoon, she repeated the visual tracking testing and did well. They said she seems to still be able to see things.

Tomorrow she we will have three tests to determine the severity of the damage, and then we head back to Harrisburg on Saturday morning.

Please continue to plead with God for her full restoration! We believe that He can! We will continue to hope until the very end that He will choose to heal her here on earth. And if He doesn’t, we will trust Him in that as well.


29 thoughts on “Pittsburgh, Day Two

  1. So so sad.Please God give this precious mother father,grandparents and etc more time with precious Tori,and please keep her from pain.In our precious Lord I pray.


  2. Philippians 4:6-7 Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.


  3. Your God is with you for all time. He is blessing Tori with such a wonderful loving and spiritual family, until she returns to Him. I pray for blessings of strength for all of you.


  4. My heart is so heavy, I only know you through your story, and still I lay awake at night grieving for you. Tori is such an inspiration to the rest of the world, I know her little life will make a difference.


  5. Praying for you! I am friends with the Crawfords and my heart is breaking and grieving with you, but also hoping and clinging to our Lord, who can do all things!


  6. Continued prayers for your beautiful gift from God ❤ Never give up hope and always know how great our LORD is ….He can do it all ❤


  7. When I think about, read about or see Tori’s picture I feel Gods presence. He is with you. I am so sorry about stage 3. You and your daughter are true inspiration … Your blog has encouraged me to daily evaluate my own faith. God bless all of you!


  8. I looked into the eyes of my son almost 10 years ago as he prepared to meet our Savior and a wonderful friend reminded me that earthly healing is not God’s “best” for any of us. His “best” for us is eternity. I absolutely believe God can deliver full earthly healing. I also believe His plan is often bigger. Your story has already reached hundreds/thousands of people. They are watching God’s story unfold in Tori and in your family. I am praying for you all every day as God uses your family to reach people with His grace. I will continue to pray for Tori’s full healing as well. Much love to your family.


  9. U r in my prayers everyday, My granddaughter is 4 now and she is going thru issues to my daughter has been taking her to pittsburgh to u got to have the faith like u do that is what brings us thru. He is a healer. We had it when my grandson was born 3 months early. KEEP THE FAITH IN THE LORD!!!!!!


  10. I love you guys. I am praying and sharing Tori’s story with as many people I can. You guys are exhibiting Jesus beautifully throughout this process, and God is using your story for his glory. I am so thankful for you, Brennan, and Tori. ❤


  11. tears in my eyes but I know that God is taking care of all of you. Two if my favorite scriptures are found in Isaiah 4l:10 and Isiah 43:1-2 & 3. We are praying for beautiful little Torie and praying for strength for all of you.


  12. Asking God for healing here on this earth for His own Name….and trusting Him. Praying for peace and comfort for all of you who are family..


  13. I am praying that God will heal this little girl and this disease will go away, Lisa I know you have so much Faith and that’s all it will take, keep praying and God will do miracles. Nina


  14. I see that you are in Pittsburgh. I am within an hour of the city. Is there anything I can do to make your stay more comfortable? Please don’t hesitate to call, especially if in an emergency (e-mail me and I’ll give you telephone contacts).


  15. I saw your website posted on a friend’s FB page. Our family is fervently praying for Tori’s healing. One of my favorite verses is Romans 4:17, “He is the God who brings life from the dead, and calls things that are not as though they were.” We speak life to Tori’s body, to her brain and her eyes, to every part of her body affected by this disease. We ask the Lord to glorify Himself by radically healing your daughter. We ask Him to restore everything that this disease has taken. We pray for peace for your family and miraculous faith for your souls. May God bless and guide you on this arduous journey, and may every member of your family be whole and healthy in the name of Jesus.


  16. My name is Terry Amos and my husband, Paul, and my son, Jonathan, were with you on the mission trip to Guatemala last year. I just wanted to let you know that we are praying for Tori and your family. I am also planning on placing Tori on our church’s prayer list and I will share your specific requests. We will lift up precious Tori to our LORD.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s