When I first saw Dr. Rhodes video I was VERY skeptical and knew I had talk to the doctor.  I was shocked the Doc called me back himself. After my call with him I was ready to put my son a the first airplane out of Alaska. However Luke’s  goal was to first graduate from high school, besides I was in the middle of editing my book “In Your Face” Duchenne Muscular Dystrophy All Pain All GLORY which needed to be done by graduation.

At first it was only going to be me, Luke and a care provider, but my daughter was scared for her brother. After I showed her the video she looked at me and said, “You mean my brother could hug me back?” Her statement struck me right in the heart. I knew she had to go.

When I told my family about the treatment they decided they wanted to help with the costs of the trip by giving  a benefit dinner and raffle. The treatment itself was going to cost $6500.00, plus Luke would have to fly first class, so this meant 4 tickets, we would also need a van, hoyer lift & room and board rental for 2 weeks! It was such an awesome experience to see my family come together to help Luke get down to treatment. To not have to worry about money was a blessing. After painstakingly making all the travel arrangements, before I knew it we were on the airplane heading to Texas for treatment.

We went with the thought even if Luke only gained 5% mobility of energy back it would be totally worth it and worst that could happen was that nothing.

First treatment left us stunned and a little scared, Luke’s lungs opened up, he slept the very first night without his bipap, (Luke’s Choice) which he has been using for the last 2 years and he sneezed so loud which he hadn’t done in forever! The next treatment more movement and strength. Finally a grip in his hands.

I gave Luke a hug while I wrapped his arms around my neck and for the first time in a very long time I felt him squeeze back! My breath caught in my chest. I asked my daughter over, she laid her head on Luke’s chest,  Luke struggled but put his arms around her and then it happened, my daughter got her wish.  Her brother hugged her back. It was the absolute most amazing thing to see my children hug each other!

Before we headed home I had the opportunity to interview Dr. Rhodes about the STS treatment for Duchenne. I wanted to make sure the world saw what was happening. Because if one Duchenne child or patient died with me in silence I wouldn’t be able to live with myself.  I posted the interview on facebook and have had a TON of response and there are 15 Duchenne boys as of right now in line to get the treatment. My heart is overwhelm with feelings of miracle and awe of life.

Now back home going on week 3 of the treatment Luke is doing more than he has in a very long time. His physical therapist who he has had for 7 years, since before his back surgery was completely blown away, he was doing everything she asked and the exercises he couldn’t she could feel his muscles trying to engage. She told us after much tears that Luke has improved 40% over all and that  some measurements she had given up on taking years ago because Luke had lost the strength and muscle, it was too much of a heartbreak.  Next she told us about a stander that could help Luke slowly bare weight on his legs! HMMMMM I wonder??