James Milhous
“Even as my body became weaker, I was trying to stay busy and active. Then the Pandemic hit in 2020. Staying home more, being less active, and not being able to continue tutoring made everything progress even more. I became much weaker and less independent. As things were getting back to normal, my family toured The Perfect Step. It was amazing. I could tell The Perfect Step would help me more than going back to physical therapy. Without my Be Perfect scholarship I would not be able to attend The Perfect Step. I am extremely thankful for the Foundation’s generosity!”
My name is James Milhous. Growing up I was always active and loved playing sports, especially baseball and basketball. In middle school, I starting tripping and then falling off my bike. Even walking normally became increasingly difficult. In 2010, after two years of doctors’ appointments, my family got a diagnosis. I was diagnosed with Hereditary Spastic Paraplegia, an ALS related neurological disease.
It was my first week of high school, and Cedars-Sinai called to say the results of my genetic testing were in and to please come meet with the doctor. My parents and I were told I had HSP type 11 which causes progressive weakness and spasticity mostly in the legs. There is no treatment to prevent or slow Spastic Paraplegia, and we were told that within ten years I would be wheelchair bound and have difficulty swallowing along with significant mental decline. That was twelve years ago.
Throughout high school, I tried to stay as active as possible. I went to physical therapy three times a week, took weight lifting in P.E., and played basketball in the driveway everyday. As my HSP progressed, I began using a walker at 18 and then a wheelchair at 23. I attended Citrus College and earned a certificate in Child Development and began tutoring K-3 students in an after school program. Even as my body became weaker, I was trying to stay busy and active.
Then the Pandemic hit in 2020. Staying home more, being less active, and not being able to continue tutoring made everything progress even more. I became much weaker and less independent. As things were getting back to normal, my family toured The Perfect Step. It was amazing. I could tell The Perfect Step would help me more than going back to physical therapy.
Now I have been attending The Perfect Step for a few months and already feel much stronger. It has also helped me emotionally and mentally. Everyone is so friendly, supportive and fun. I feel like I have the power to stay strong and fight the progression. I feel like I can be a positive role model for the kids I am hoping to get back to tutoring soon.
Thank you so much to all of the Be Perfect donors. Receiving a generous scholarship for The Perfect Step means a lot to me and my family. My brother, Collin, was also diagnosed with Hereditary Spastic Paraplegia soon after me. Without the scholarship, it would be difficult for us both to attend The Perfect Step as often. We are extremely thankful for the Foundation’s generosity.
