What's Up Wednesday -- Kate
#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Kate, a 2015 Speak Now for Kids Family Advocacy Day Hero. When she was 4 years old, Kate was diagnosed with Spinal Muscular Atrophy (SMA), a genetic, progressive, degenerative disease, that causes muscle weakness and other neurological, respiratory and orthopedic issues. With her Boston Children's Hospital team by her side, Kate knows that the possibilities for her future are limitless.
So, Kate.....what's up?
Why do I advocate?
I enjoy advocating because I want to help other children the way I know others have helped me. It isn’t necessarily that I feel indebted, but rather empowered by the passionate work others have done before me. It’s a privilege to be able to advocate and help others find their voice in something they wish to change
Person I find most inspirational
My mom and I are alike in more ways than I’d like to admit. I hope that someday I am able to become as successful as she is and make people happy.
What makes me unique
The lessons I have learned from being unique have made me unique. Being different often makes us more accepting to the things we can’t change, but also gives us more drive to change the things we can
What jam gets me up when I’m down
I nostalgically listen to a lot of early 2000’s music when I’m sad… or when I’m happy
What have I overcome?
Last year I was able to get my license on time without any hand controls or accommodations made to my car. Being so obviously disabled made it challenging for people to look past the wheelchair and see that my legs were able to keep control of the car. The instructor worked every day with me, figuring out that I was capable of using one foot on the brake and one foot on the gas to compensate for my lack of reflexes.
There were many people who thought it wasn’t possible or even legal for me to drive, but after a discussion with the DMV and reaching out to my State Senator’s office I was able to prove that I could drive just as well with two feet as everyone else could with just one. At the end of my road test the instructor even said I was better than any of the other drivers he had tested in the past week.
What do I want the world to know about my condition?
If you ever spend a day with me, you will understand that the world isn’t made for people in wheelchairs right now. It’s often eye-opening to others to see that sometimes sidewalks just drop off without a curbing cut or I’m unable to get into stores because of stairs in the entry way. Though it’s discouraging, most often I just shake it off. My condition doesn’t limit my ability to live life to the fullest. Sure, I might not be able to get into a small business in downtown Boston, but maybe if I was able to get in I wouldn’t be able to do other amazing things like meet members of Congress.
If I could change the world, I would….
If I could change the world I would give every child a home where they truly have the ability to be whatever they want to be. Children are the future and in order for the future to be bright all children need to have an equal opportunity to grow to their potential
Who, or what, is my biggest supporter?
My family is my biggest support because they have given me the opportunity to take full advantage of what I want to do with my life. They challenge me to work hard and be humble about my accomplishments
What does my children’s hospital mean to me?
Boston Children’s Hospital has given me more opportunities than anyone else I know in my 13 years with them. Not only do they provide a clinic for Spinal Muscular Atrophy patients like myself, but they were also able to enroll me in a drug trial that has the potential to stop the progression of my disease. Besides the medical aspect of the hospital, Boston Children’s also allowed me to become part of a Teen Advisory Committee that specializes in government advocacy for medically disadvantaged children as well as helping in the transition from pediatric to adult care. I love Boston Children’s Hospital so much that for the past 3 summers I have interned in their Office of Government Relations and am hoping to have a career path in public health and policy.
How do I plan to give back to the world?
I am going to give back to the world by taking full advantage of any educational opportunities and volunteer projects the world has to offer. I hope to travel across the country and maybe the world to learn areas of children’s health that is not being appropriately tackled
What do I want to be when I grow up?
When I am older I want to eventually get a degree in law and work for a children’s hospital or a department of children and families. Most specifically, I would like to work on adoption or foster care cases and their medical treatment.
Missed Kate’s original post? Check it out here