So hopefully, if you are reading my blog, you know about my best friend, since middle school, Kevin Swan.
See this post here for the initial announcement about Kevin's diagnosis of ALS. This February will be one year since Kevin was diagnosed with ALS at Northwestern University in downtown Chicago. It has been a wonderful year, as Kevin has only slowly progressed in the disease, moved back to our hometown allowing me to see him multiple times a week, and the launch of his foundation, A Life Story. In the last few months, I have had more dinners and face-to-face conversations with Kevin than the last 12 years combined. What a blessing!
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| I love this picture I captured of Kevin. It was his first night at his new condo. |
In this picture you see Kevin's first tattoo. Kevin described his tattoo as, "...representing everything from seasonality, strength, timelessness, shade, deep-rooted family, and a commitment to GROW." Kevin intends on adding words and phrases to his tattoo. Let's be honest. Kevin hardly has any use of his arms and hands anymore. Putting a tattoo on his arm is an expressive way to still utilize them.
His Progression. Here are the answers to what everyone means when they ask, "How's Kevin doing?". Thankfully, he can still text and use his iPhone to communicate. Verbally, his voice has softened, yelling isn't an option but isn't his style anyways ;) His arms and hands are at about 5% use. When we go to dinner, I always sit on his left so that I can assist him with eating. I'm learning way more about my best friend than I ever thought I would! For a second, put yourself in Kevin's position. His humility surpasses my expectations. Let me be clear, he is able to use both hands to eat a sandwich, it is the coordination of using silverware that is lost. He can't style his hair, eat cereal, or drink from a heavy glass. His muscles in his hands, arms and neck are wasting away. Visually, you can see his fingers curling, his drooping shoulders and skinny foreams. He wears a wrist support and often someone asks him if he hurt his wrist, after going in for a handshake. Oh, how I wish Kevin could say, "Yep, a basketball injury." Of course, Kevin finds the positive and uses every person's question as an opportunity to educate them on ALS.
I'm sure everyone is wondering, how much longer can he walk? How much longer can he talk and swallow? Honestly, we
have no idea. The doctors do not know and we do not care to speculate.
There is no timeline or progression chart with ALS. In the beginning Kevin had fasciculations, or spasms, in his arms and to this day he still has limited use. Since the first symptom it has been 2 years and 5 months. Is that good or bad? Hard to say. Since most people aren't diagnosed until years after their first symptom it's hard to gauge a "normal". The fasciculations have begun in his legs. This isn't good news. Sorry but at this moment I cannot find the positive. I must move on.
What Kevin cannot do does not define him. It is what he CAN do that impresses me about him. He can FIGHT! He can BELIEVE. He can live every day to it's fullest, dream big, and work toward finding a cure to ALS.
Kevin's foundation is called
"A Life Story" foundation. Kevin's vision is to showcase how ALS is effecting the lives of sons, daughters, mothers, fathers, wives, husbands and best friends. He is candidly sharing his own story and wants to record the stories of other ALS fighters. The purpose of sharing their stories is to create awareness, which in turn, creates funding for clinical research. This is Kevin's plan to cure ALS. If there is one thing I know about Kevin, it's not to doubt him. He is extremely capable of running a successful foundation. His time owning a production company in New York City and his experience as Singlehop's director of public relations, has prepared him for his title of CEO of his foundation. The goal of the foundation is to find the cure to ALS. I have no doubt that we will do that. I'd appreciate your support, financially and through advocacy, on this journey to find a cure.
Here are 5 things that you can do right now to support our fight:
#1. Pray for Kevin! Pray that God continues to reveal Himself to Kevin. Pray that God helps us find a cure to ALS.
#2.
Go to the website and watch Kevin's video.
#3. Find A Life Story Foundation on Facebook and follow us to learn about events! Our next event will be in May. Stay tuned! We are in the planning stage. If you want a task for our event, please email me!
#4. Buy A Life Story Foundation merchandise on the website! Sample pictures below. The branding and quality is impressive. We will be adding more merchandise soon!
#5. If you are a local, come to our events to show your support!
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| I love the branding that Kevin designed out! |
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| These bracelets ROCK! |
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| Koozie anyone? |
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| Wine tote bags! =) |
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| Kevin. |
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| Kevin's amazing mom, Julie, who has been a ROCK throughout the last year! Her role in the foundation is CFO. |
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| My hubby Ryan with Kevin. I am thankful for the amount of support that Ryan has shown Kevin! |
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| Probably a lifetime favorite image of me and my bestie. I have accepted the role as Director of Awareness for Kevin's foundation. I intend to work diligently to find the cure to ALS. |
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Love his laugh and smile!
I took these pictures as a Christmas gift for Kevin's parents. |
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| This is Kevin's brother Zack~ He is in his senior year at BU. It was so nice to have him in Bradenton for the full winter break. He's a gem. |
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| Another picture that I cherish. |
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| Brother's laughing it up! |
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| I made Zack hug Kevin! LOL =) |
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| Why so serious gentleman? |
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| This got a good laugh! |
If you made it all the way to the bottom of this post, thank you!!! I appreciate your support. I love blog comments, so please leave your thoughts. I'm sure Kevin would love to read them too.
With Love,
