Stewart’s story:
My Kennedy’s disease journey began with a series of puzzling symptoms, including weakness, tremors, and a lack of energy. My CPK muscle enzyme levels were off the chart. March 2010 marked the turning point when I finally received a definitive diagnosis through DNA testing.
I have always been a self-reliant and active person. Initially, I shared my diagnosis with only a small group of my family and friends.
At work, I did my best to conceal my symptoms and continued my duties to the best of my ability. I wanted to leave my job on my own terms. As my physical limitations and fatigue worsened, it was becoming increasingly challenging to hide my condition. I’d rather be perceived as lazy than disabled. Finally, when I felt at risk of causing myself harm and to the surprise of many of my colleagues, I decided to retire at the age of 60.
The progressive nature of the disease creates an ongoing challenge adapting to my ever-changing limitations. It is both physically and mentally demanding. I am incredibly grateful to have my wife, family, and friends supporting me. However, my pride and stubbornness sometimes hinders my willingness to use physical aids and accept the help that I need. This has resulted in a few unexpected falls. I strive to count my blessings daily and not let my condition define me.
With this hundred-step challenge, I feel confident with my stubborn nature and the assistance, I am determined to walk the 100 steps, but I will not attempt them all at one time.
A note from Connie:
As many of our friends and family know, Stewart’s spirit is strong and thankfully he looks at everything with a positive attitude. Even, when he falls, his main saying is “It’s all good.” He is a dare devil on his scooter riding dangerously too close to the edge of our dock for my liking, but living on the edge is something he did when he use to rally race in his younger years.
For those with Kennedy's Disease, even taking a few steps can be a challenge. This fundraising campaign represents the resilience of those living with KD and symbolizes the steps we are taking toward a treatment, support, and ultimately, a cure.
We are thrilled to participate in the 100 Step Challenge, a fundraiser supporting Kennedy's Disease Association! We are passionate about the cause. This cause is dear to our hearts, and we need your help! Every donation—big or small—helps to reach our fundraising goal and directly impacts this worthy cause.
Here is how you can help:
- Donate: Contribute whatever you can. No amount is too small!
- Spread the Word: Share our fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!
Thank you for standing by us in this effort. Your support means the world.
Stewart & Connie