September 24th, 2019
So, this is a few weeks late, but we recently had Ethan’s bi-annual visit to the specialist at The Cleveland Clinic. This was the first appointment that I was worried about, the first time that as we walked into the clinic my heart was filled with worry. They said that he wouldn’t notice any changes likely until he is around 10 years old, but we are almost half way there folks. For the longest time we have been able to live with RP in the back of our minds. It has just been something we will have to deal with eventually. Eventually is getting too close for this mommas’ comfort. I never knew how difficult it would be as a parent to deal with heartbreak (or potential) of your child. I don’t think a single thing in the world hurts more than the thought (or the actual event) of your child’s soul hurting. I know that there are worse things in the world but somehow that doesn’t lessen the hurt of this. No one wants to lose their sight. It’s a vital part of our living. Think of how many things in your life are affected by your sight. Everything, I mean everything. Think about how you feel when you see a beautiful sunrise, or the face of a loved one smiling back at you. Think of how you communicate with your eyes, how your memories are affected by your ability to see. The gift of sight enriches your life.
We were blessed by the good Lord above by hearing that he is not noticing any changes in his vision/eyes yet. We also discovered that there is currently a human clinical trial going on to treat Ethan’s specific gene mutation. This is HUGE news!! This is the news that we have been waiting for. If all goes well with the clinical trials, we could be looking at a treatment/cure for Ethan in the next 5-10 years. It gives me goosebumps just thinking about it. THIS, THIS is why we do what we do. This is why we work so hard to raise money, this is why we work so hard to raise awareness. We want our son to have the gift of his sight.
The news hit me in a lot of different ways. I felt a host of emotions. I was happy of course, to think that there might actually be something we can do to help our son! But I was also scared and cautious and almost angry. Angry to think that this could be just a tease. That maybe the treatment won’t work in humans or maybe it won’t be safe or will cause some other side effects. Angry that insurance probably won’t pay for it and we won’t have the money to afford it.
All we can do is continue to pray. Praying and my family are literally the only things that are getting me through the days of worry and fear.
Please continue to pray for our family and our Ethan and continue to support us in any way that you can!
I am the proud mommy of Ethan! My husband Jason and I decided to start up this web page as a way to stay connected with our friends and families and share our story!