So we as parents of a child with what is considered a “rare” disease are in a very difficult spot to say the least. Not only does our beloved have a disease that we had not heard of until a few years ago – we are now thrust into a whole new universe that we never knew existed. We are pseudo-scientists having meetings, conference calls with brilliant scientists from all over the country, visiting hospitals and laboratories, and meeting many other Duchenne families that we would never encounter in our lifetime without Duchenne. It’s just so interesting. Meeting some really cool families that live in and around southern California, that we would normally find as friends, and just happen to be parents of a boy with a crazy disease – just like our son! What are the chances? Without Duchenne, we would be going about our lives, busy with careers, kids, sports, vacations, house stuff and not even know what Duchenne means. Something tragic, has brought us together in a powerful way that has an unmistakable bond. I will say that I have become more spiritual than ever, and believe that God has the final say and our journey is up to him. No matter what comes against us- God can make good out of something tragic if you open up and let yourself see it. There are blessings in all – and we have seen that since that fateful time of summer 2011.
I can say one of the blessings was being able to meet such brilliant people that have committed their careers to science and to ending Duchenne. Listening to their histories, earning PHD’s and MD’s from the top universities in this country and what their knowledge of science is and the human body – it is fascinating. Our social circles have never before included such brilliant minds from Duke or Yale. The most impressive people I had met or worked with to date were celebrities or filmmakers living in an unrealistic egocentric bubble of Hollywood and making millions of dollars, while not being grateful for it. Having no sense of reality and some of them truly living in what seemed like a parallel universe. Really seems like a joke when it comes to sitting down with someone studying genetics or specifically, mouse models of Duchenne for over 20 years. Life has shifted for us.
The greatest thing is the amount of love and support has come our way. Our friends and family has embraced us and made us feel that we are not alone. When I have a bad day – I have at least 3 people I can call. I am very grateful for that. You truly cannot imagine tragic things in life unless you experience it. I look back and realize that I was out of touch with things and was not quite as aware or sensitive to people and to things that I should have been. Not until something happens in your own life can you truly know what pain is and to pause and be empathetic. But we all must learn that life is truly a gift and that we are all here for a purpose. It is our job to discover that God-given purpose and to succeed. I have discovered mine.