Wednesday, October 14, 2015

Praying & Believing

Over 2 years ago, I sat on the beach and read about a clinical trial for Congenital Muscular Dystrophy.  The new drug, Omigapil, was described in the news release:  Nonclinical studies in a disease-relevant model showed that omigapil inhibits cell death and reduces body weight loss and skeletal deformation, while increasing locomotive activity and protecting from early mortality.

As I read, I was filled with hope. The only thing that mattered to me were the last 4 words PROTECTING FROM EARLY MORTALITY.   Please Lord, let it work and be available within my Lily's lifetime.  I sat on that beach and prayed and begged that Lily could be a part of this study.  I called several prayer warriors to begin praying that Lily would be chosen for this study.  Over a year ago, as we sat at lunch with several friends from Sunday School, I got THE call...Lily was a candidate for the study and we were asked to let her participate!!  Answered prayers!!

Over the past several months, Lily has been screened and we have completed several phone interviews.  She was placed in Cohort 2 of the drug trial and we have eagerly waited for her phase of the trial to begin.  The first group of patients have already received doses of Omigapil.  As I watched the girls play outside yesterday, I got an email.  Scheduling has started for Lily's cohort!

Beginning in February 2016, Trent and I will take turns flying with Lily to Maryland to spend 2 days every month at The National Institute of Health so that Lily can be assessed while she is taking the Omigapil.  We'll travel each month through July 2016.

We know that this drug is in the very beginning stages of study.  This is a dosing trial, so Lily will be receiving the actual treatment.  We have also been told that if she shows any improvement during the drug trial, we can petition the FDA for her to continue Omigapil after the study is completed.

I share this to ask for your prayers.  Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours (Mark 11:24).  God has been so faithful to us over the years.  He has blessed us with so much more than we deserve.  We are praying daily for a miracle for our sweet Lily.  Please pray without ceasing with us, believing and claiming that God can do ANYTHING.

As I got Lily ready for bed, we sang this little song that I've sang to her since she first came home.  I picked her up and she struggled to wrap his tiny arms around my neck.  I whispered, "don't ever leave me, Lily".  She promised she'd stay with me until she was 60, but was quick to add that I would be way old :) 

Every great work of God first is impossible, then it is difficult, and then it is DONE!!  Thanks for praying with us as we gear up for the fight of our lives.  Can't wait to see how God will be glorified through this process!

For this Child I prayed, and the Lord granted me what I ask of Him!


  1. So sweet! I will be praying for sweet lily.

  2. What great news! I can't wait to follow and see if this drug becomes to miracle we all hope it will. I'll be praying!