My name is Lili Portmann and I was born with Spinal Muscular Atrophy Type IIl (SMA). SMA is a neuromuscular disease that has affected my lower extremities. As a result, I am in a wheelchair and use leg braces to walk with sticks. To be honest I do not look at myself as different from anyone else just because I am in a wheelchair. It just has never been a big deal to me.
When I was younger the doctors told my Mom that I would never walk. Thankfully, I have proven the doctors wrong because I have never been the kind of person to be told no. I have always believed I could do anything. I started to walk when I was three and half and have not stopped. Of course there have been many surgeries to make walking a bit easier over the years, but that has never slowed me down!
But it was a long road to get here. I was never able to wear jeans. I also could not dress myself with skinny leggings because I could not get them over my foot without help. My mom is in the fashion industry and she was always so frustrated about the fashion choices available for me to wear. For example, she could not even find the right leggings to wear under my braces. Finding me the perfect thing to wear was very challenging for all of us. And I cared. I used to tell my Mom that I longed to be “posh.” Believe me, it was not easy.
Then unexpectedly, I learned about the “Runway of Dreams” from people at the Muscular Dystrophy Association. Their adaptive clothing opened up a whole new world for me Meeting Mindy and her amazing family has been a “life changer” for me. The clothes not only have given me the opportunity to become more fashionable, but I also feel newly independent. These clothes have also allowed me to develop my own style. Runway of Dreams has provided me the opportunity to finally have the same type of options to wear as everyone else in the world!
Fast forward to today, I am sixteen years old, and am a junior in high school. I am the treasurer for the Key Club at my High School and the 2016 Goodwill Ambassador for the Muscular Dystrophy Association of New Jersey. Not only can I walk –but this past year I walked in the “Runway of Dreams” Fashion Show! As a result, because of Mindy’s vision I am even more proud of who I am, more confident, and certainly more fashionable. I finally feel more like myself! Not only do I have fashion options now, but I am more independent and can dress myself each day with ease. Runway of Dreams leggings and jeans have a magnetic opening on the side that allows me to easily put them on. One of my favorite pieces is the dress I wore at the Tommy Hilfiger and Runway of Dreams Fashion Show. There are slight modifications to the dress that you would never notice. When I walked that runway this past June in New York City, felt like a STAR.
These days, with the fashion show behind me, my life experience has changed a lot. For example, in the past I really wanted to be part of the “skinny jeans” craze and wear all the colors they came in. However, now I am able to put a pair of jeans on! Another example is that we have “dress down day” at our school and jeans are the rage. It is so great to be able to participate with everyone else.
Thanks to Runway of Dreams, now if am challenged, it has nothing to do with fashion. Instead it is about preparing for the stress of a college search—just like my peers.