October 11th I went in for my annual neuromuscular checkup with Dr. D. He and I have been keeping an eye on developments in SMA research for the last few years. There has been some great advances in finding a cure for SMA. So far there hasn’t been a treatment plan that Dr. D and I felt was right for me. Finally after a few years of patiently waiting, we found one. It’s an oral medication called Evrysdi, that I take daily. We started the paperwork for approval that day. The hope is that the medication will stop the progression of SMA. 

Last Tuesday, November 2nd, I received a call from the company who developed Evrysdi. I was approved. Now we began the waiting to receive authorization from my insurance. I was expecting months of going back and forth with appeals and negotiating affordable copays so I could begin treatment. 

Monday, November 8th, I received the call that my insurance authorized the medication without protest. I would receive my first months supply on Wednesday, November 10th. My out of pocket expense as of right now is $100. It will probably be less than that once it goes through my secondary insurance and/or patient assistance.

Words can not describe the excitement I feel. There are so many of God’s promises running through my mind as I write this. In Philippians 4:19 God promises to supply all my needs, and He has supplied my needs over and over. I also started therapy this week. The timing could not be more perfect. I have done therapy in the past and have seen improvement. My expectations are much higher this time. God’s timing is always perfect. This is an answer to prayer. So many people have been praying for me. God’s word says if two stand in agreement it will be done (Matthew 18:19). I believe by the beginning of 2022, in less than 60 days, my muscles will be waking up and doing their job again. 

Will I be walking again? Probably not in 60 days, but I’m not limiting God either. God has always been there. He is always faithful (1 Thessalonians .5:24). Even when I wanted to quit, He didn’t give up on me. When I started to turn my back on Him and walk away, He never left my side (Hebrews 13:5). He loved me enough to pull me out of the darkness (Psalm 40:2 and John 8:12). He forgives me every time I mess up (1 John 1:9). His mercy and grace saved my life (Hebrews 4:16).  I surpassed all the doctors expectations and was still getting negative reports. Proverbs 13:20 says those who walk with the wise become wise and those who are around fools will suffer harm. Jeremiah 3:15 says God will send you people to help guide and teach you. God sent me doctor, who encourages me. Dr. D always has a positive report and gives me hope for a long healthy life.
When I talked to God six years ago about retiring from teaching, I said I wanted His will to be done. I knew He had a plan for me (Jeremiah 29:11). He had called me to teach. He had placed me in a school that loved each other. At that time my body was so tired, I didn’t know how long I could keep going. God gave me peace right away, and within a week  began putting everything in place for my retirement. I have that peace now, concerning Evrysdi. As quickly as everything came together to begin treatment, tells me this is part of God’s plan. 

My Evrysdi was delivered this morning. Almost a month to the day since I say Dr. D. I’ll keep you updated.

– Until another day, AC