Tag: Krabbe

Headed to Pittsburgh…

On Friday night we were connected to a Facebook group for Krabbe families and I love how they welcomed us: “I’m sorry you have to be here, but this group is great.”

So many of them said that we needed to contact a Dr. Escolar in Pittsburgh immediately. One even messaged me with the contact info and offered to contact her for us. We readily agreed, because we didn’t want to bother her on a weekend.

She called us 15 minutes later at 10pm on a Friday night.

Dr. Escolar listened to my recap of Tori’s medical history leading up to the diagnosis and said that she wanted to see her right away.

Over the weekend, her nurse practitioner sent me forms to fill out and return so that we were ready to go on and wouldn’t have to deal with paperwork.

This morning, they called and asked if we could be there by Wednesday morning to begin the evaluation and testing.

We were prepared to pay for our expenses to get there and stay there, as we will be there for four days, but they have a foundation that is paying for all of our travel and lodging! What a blessing.

So, my parents, Tori, and I leave tomorrow on the train (since Tori doesn’t like the car right now) and will come back on Saturday. They are sending a car to pick us up, and a reader of the blog even arranged for them to stop by her house first to install the car seat they are lending to us!

Another blessing was that we were able to obtain a CD with Tori’s MRI on it this afternoon to take with us.

It will be an interesting week, if nothing else. 😄 We aren’t hopeful that she can be cured because they haven’t had success after children become symptomatic, but it doesn’t hurt to go!

Also, at the request of many, we have set up a P.O. box to receive any mail for Tori that comes in.

The address is:
Team Tori
P.O. Box 126425
Harrisburg, PA 17112