It wasn't until I became an adult, that more SMA played a part in my life.
I was originally Dan's caretaker, and it turned into more. He became like my best friend, and from there, I fell in love with my best friend. And that's where we are today.
During the beginning of our relationship, I noticed that he wasn't taking care of his self. So it made me nervous. And I finally stepped in and had to let him know how I felt. And I had a very emotional conversation with him, just letting him know I love him. I wanna spend the rest of my life with him.
What really motivated me to start taking treatment was Milly actually telling me how important it was for me to be healthy for her. And so I did seek treatment, and meeting with my doctor and my neurologist. Since taking Evrysdi, I definitely have noticed my improvements, and my doctors have been very happy with the progress as well.
What we really like about Evrysdi is, it fits into our daily life. It's a liquid I take every day. Even if we travel, we just take it with us.
We give him his oral medication every morning.
Every morning after breakfast.
I work for the largest entertainment company in the world. I work at home, so it’s a long commute to my office in the house. And I pretty much work all day, take a break for lunch. And as soon as I'm done with work, I just wanna be with my wife.
Since we're so spontaneous and he likes to do things randomly, we go to the park on Saturdays, sometimes the beaches, on Wednesdays and Thursdays. Go to the dog park, just a random day. We love to play games, especially cards, because we're really competitive. We always say goodnight and I love you. We always say I love you.
Milly told me about Evrysdi. She is studying to be a doctor. So, she understood all the molecular – all the biological stuff and how it works.
I think my biggest encouragement to other adults with SMA would be to seek out Evrysdi. Talk to your doctor, because even if it doesn't have the same effects physically as it does for me, it definitely will give you hope. And that's the biggest thing for me anyways.
I am grateful for everything that I have. I want to keep moving toward my future with my family.