This blog is written by both Rob and Anne-Marie. Indented and italicized paragraphs are written by Rob.  We visited the Clinic for Special Children, in Lancaster, PA. There’s a reason we decided to come here, in the middle of Pennsylvania, Amish community. There’s a man here, Dr. Strauss, a world-renowned specialist in GA-1. He helped […]

This past Tuesday Rob and I toured the Brain Plasticity Center here in Orlando. We spent two hours talking with them and looking through their facility. It was so amazing to hear testimonials from the staff in regards to how some of their youngest patients have responded to this therapy. The best way to describe what […]

I feel like there’s been a big elephant sitting on the blog and I’m going to talk about it. About two months ago, I wrote about how we were going to Georgia to attend a healing conference in hopes that Reagan would be 100% healed by God. Well, I didn’t make a huge announcement about Reagan being instantaneously and miraculously […]

Earlier this week I had a Facebook memory come up…some memories are horrible, and they’ll always be horrible. I don’t like the reminder, Facebook. This was the memory. It’s a blog from two years ago, and in painstaking detail, I write about our eight day hospital stay. When I read it, I think: “maybe that’s where […]

“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” —Isaiah 41:13 Reagan was fever free until around 6 pm. But at dinner, she was shivering and yawning (it was a no nap day). After getting home from an inspection, […]

Happy birthday, Reagan. Three years ago, we took this photo…it was before we knew anything was wrong with your newborn screening. A few short hours later, we received a call that would change our lives forever GA-1. We worked so hard to never get you sick… …but one day, you got sick. And we did […]

The thing mamma never did tell you is when those days would come or how they would make you feel. Like today. All I know is I left a therapy appt for Reagan and ended up at home in tears. The dishes were piled high, I looked at a massive pile of clean clothes on our […]

I went to the Dr. the other day b/c I was having chest pain. I know why. I was stressed to the max having to deal with all of Reagan’s super expensive medication that she was close to running out of. Oh the joys of switching insurance co’s (her insurance co. last year, went under). […]

We saw Reagan’s new neurologist a couple weeks ago. We really like him. As he was examining Reagan he asked us what the MRI said since he didn’t have the records yet, and we let him know that the entire basal ganglia was damaged. He seemed to be disbelieving of that. “Both sides though?” “Ummm…Yes? […]

Just logged in to type another blog and noticed this one was never posted from April 2015. So while it’s delayed and it’s not what is happening today, I want to share. And hey, I think we can all use the reminder that God is God and we are not.   We just had a […]