Keep Smiling

Summer has come and gone. We enjoyed camping, swimming, boating and spending time together. All of Wyatt’s favorite things. It went fast but we enjoyed every minute. As we get back into our routine and slow down, we are also faced with the reality of Wyatt’s disease, progression. Our hearts break as we watch his body break down before our eyes. His everyday activities have become more difficult for him. At school, he uses a wheelchair the majority of the day. At home we carry him wherever he wants to go. His speech is becoming slurred, especially when he is tired. That makes it very difficult for us to understand him. And his left hand seems to not want to work, as it stays clenched the majority of the time. We have learned that he has restricted lung disease. And recently think he may have had an absent seizure at school. All of this within 3 months. He never complains, he never gives up, and he never stops smiling. This kid is amazing!

We have several tests and appointments coming up in the month of September. Please keep us in your prayers, as this journey is getting harder.

“Sometimes you have to let go of the picture of what you thought life would be like &

learn to find joy in the story you’re living.”

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THERAPY

Wyatt will never get the opportunity to play on a sports team with his friends or experience a pick up game with the neighbor kids. But he has his own sports, which is also his therapy. Each week, Wyatt goes to HETRA and does horse therapy with Waldo and his therapist for 30 minutes. This therapy helps Wyatt with balance, coordination and muscle strength, 3 things he lacks due to his mitochondrial disease. It also gives him a sense of belonging and accomplishment. It is amazing to watch a seven year old move a 1000 pound animal around the arena with grace and pride. HETRA is an outstanding facility and program.

He also does swim lessons every Saturday for 30 minutes. Not only is it a necessary skill, but it is so great for his little body. With the warm water temperature and buoyancy, he can safely build coordination and muscle.

Every little bit of therapy helps Wyatt. The fact that he has fun doing it, makes it even better.

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Speechless

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.