MDA Ambassador Guest Blog: A Life Made Possible by Love and Support

Janna Leach is 43 years old and lives in Louisiana.  She has a bachelor’s degree in education from LSU and currently has my own tutoring business.  Jana loves meeting new people, shopping, football, and spending time with friends and family!

I was diagnosed as an infant with spinal muscular atrophy (SMA) in the 1980’s when there wasn’t a lot of knowledge about SMA. Being the third child, my parents knew that I wasn’t meeting all the milestones. They took me to multiple doctors and they were told that I was a “lazy baby.” My parents knew that I was more than a “lazy baby” and continued to pursue a diagnosis.

Janna (right) and her mother (left)

I was finally diagnosed with Werdnig-Hoffmann SMA at Ochsner in New Orleans, LA, in 1984. I have never been able to walk. As a child, I used a push wheelchair until about 6 years old and then I transitioned to a motorized wheelchair. Growing up, I was so lucky to have family support to get me through school, sicknesses, surgeries, and so much more.

My dad worked hard in the insurance business to support our family, so my mom was able to be a stay-at-home mom. My mom has always been my best friend, and I have been fortunate to have her as my caregiver my whole life. During my school years, I had an aide to assist me during school hours. My mom would get up very early every day to get me ready and drive me to school. It has always taken me a little longer to get ready because my mom has to assist me with all of my needs and she uses a lift to transfer me.

As I got older, I had paid caregivers come to my house in the evenings to help me bathe and get ready for bed. If my caregivers didn’t show up, I was thankful to be able to have my mom to help me. My parents traveled with and attended social events with me. As a teenager, I was never embarrassed that they had to come with me. I was thankful that they were able to experience life with me.

Janna’s father with Janna

After graduating high school, I attended Louisiana State University. LSU is a three-hour drive from my hometown. My parents were able to help me find an accessible apartment. After moving me in and helping me find caregivers, my mom went back home, but she was always a phone call away when I needed her. I had 24-hour care with formal caregivers at college. Most of my caregivers were dependable, but some were not.  When a caregiver was not available or didn’t show up for their shift, my friends filled in until my mom was able to get there.

A lot of my caregivers turned out to become my best friends! We traveled together, attended sorority events and other activities together, and they also came home with me during the summers.

After college, I started teaching 2nd grade. I was at a private school. Private schools don’t necessarily have the same guidelines as public schools, so I had to bring my own assistant with me to work. This was challenging because I had to find trustworthy people who could work long shifts. I was able to find an education student who only had class a few days a week, so she was available to come to work with me on her days off. My mom moved in with me temporarily so she could come to work with me on the days my caregiver couldn’t. After the school year was over, I decided to move back home so it would be easier for my parents to help me.

Since moving home, I started my own tutoring business, focused on elementary level math and English language arts, and I have a Podcast. I have had a few paid caregivers over the years, but my parents have always been my main caregivers and support. Being a caregiver and/or having a caregiver can be very hard and difficult. I am so thankful that my parents and I have a great relationship – and I appreciate them so much! I couldn’t live the life I have without them!