Our Feelings Leading Up to The First Appointment

Chris, Katie, and I have been processing the significance of the drug Spinraza since we attended the webinar in early January 2017. We were in awe of what they were saying was happening with the children that had been testing the drug. We were so excited that there would not be a need for younger generations to experience the difficulties that the older generations have been dealing with. Spinraza is not a cure, but it is supposed to stop the progression of SMA. So, while SMA is still possible, it should not limit the younger generation’s ability to live longer, fuller lives.

Then we heard that they were going to offer Spinraza to everyone with SMA no matter what their age. We were in disbelief. While this drug has not been tested with adults, they are hopeful that it will be helpful for adults as well. At the least, it can stop the adults from getting weaker and anything greater will be a blessing that has always been hoped for. After hearing this was a possibility, we took time to pray about and think about the situation. We talked to insurance companies, family, friends, and others with SMA to get their take on this situation. At the beginning of March, we found a doctor and called for an appointment. The first available appointment wasn’t until June 5th. So we have been patiently waiting to take the next step on our adventure.

Aside from worrying about how we can afford this process, we have been onboard with trying the drug out. Once we decided to pray about it and asked our family and friends to pray about it, we knew that the money situation would work out somehow as long as we kept the faith that this was the correct thing to do. Chris and I have both had moments of doubt or concern, but we have given this process over to God. So, when those moments happen, we quickly turn them over to Him to handle. We have no idea what will happen if/when (see a little doubt slips in now and again) Chris gets the Spinraza treatments. Yet whatever happens, we thank God for His blessings and for the scientists that have been working a very long time on the research for the disease and treatment. We also want to thank all of the people who have donated money and time to fund this process either through the telethons, private donations, or support to the families of those with SMA. You may not have realized the significance of your donation, but it is changing lives in big ways, especially in this situation.

To sum up how we are currently feeling just days before the first appointment with the doctor:

Chris- anxious, nervous about the process and the possible/probable pain, and wondering about how long it is going to take to get the injections started

Katie – speechless, “I didn’t think anything like this would happen in my lifetime. I hoped but never expected it to happen.”

Me – excited to see what God has in store for Chris, others with SMA, and all of their families