Doug and I walked away, speechless, from an appointment with our genetics doctor in March of 2017 with the message that our son has a progressive disease with no cure. No parent is prepared for that kind of news. But as we took this horrible news and began to tell our family and friends, we quickly realized that we are not on this journey alone. And the one person that this disease affects the most, on a daily basis, has shown us so much strength and perseverance. When you peel away the disease, there is an extra special, brave, loving, rare little boy that values things in life that mean the most. Wyatt has taught us so much during these past two years, and that may be exactly why God put us on this journey. We have a long road ahead of us, and it is not going to be easy, but knowing that you are all behind us, makes the road a little easier to walk. This too, leaves us speechless.
Our latest set back is Wyatt’s vision. After an ERG test in January, he was diagnosed with retinal dystrophy which is a result of his mitochondrial disease. There isn’t anything we can do about it but give him the tools to work with the vision that he currently does have. It is not reversible, but the rate of progression, like his disease, is unknown. He is learning the basics of Braille in school to prepare him for the future.
We will, of course, keep everyone updated on this blog as much as we can. Not just with the set backs, but with the celebrations. Because each day that he is with us, we celebrate.