We were hit hard last week with the news that my (Ashlie's) best friend since 8th grade, Kevin Swan, was diagnosed with ALS, Lou Gerhigs Disease. Kevin and I have remained close, genuine friends through high school, college and into our adult lives. Kevin eagerly joined the mission trip to Ethiopia and Uganda in July of 2010. He was extremely supportive of our adoption and met Easton for the first time in Ethiopia. He instantly fell in love with him. When Kevin returned from Africa he experienced tremors in his hands, spasms down his arms, and muscle loss in his upper body. He knew something wasn't right and begun the long journey to find answers. At first we thought he contracted a nasty African Bug, then we thought it was a side effect of the vaccinations, possibly a sports injury, even an Auto Immune Deficiency???? We considered every possibility as he went through numerous test. After 18 months of questioning and testing the Northwestern ALS Treatment Center in Chicago confirmed our worst nightmare. It was ALS.
Here is what I know about ALS. It robs a person of their coordination and strength but allows their mind to be fully intact. It can be a slow progression but sometimes attacks quickly. Each patient experiences a different progression. Kevin is in the very early stages of the disease. There is no way of knowing what abilities he will have within a year. There isn't a cure but research is being done across the country to fight for the lives ALS is taking.
I am fighting as hard as I know how to. I have organized a team to participate in the Walk to Defeat ALS on April 14th in Sarasota. The team has grown to over 30 people who have raised over $15,000 in 4 business days. We are planning an After Party to celebrate Kevin and show him that he is supported and loved. Each and every person who reaches out to him is proof that he has an army behind him. Rightfully so, we have named our team "Swan's No Limit Soldiers". I have text, called, facebooked my best friend more in the last week than ever before. This is just the beginning of what I have to offer him.
I am leaving on Friday to spend the weekend with Kevin. I have so much I want to say to him. If our time is short, I will leave nothing unsaid.
I am asking friends and family to join me in the fight. First and foremost, please keep Kevin in your prayers. Pray for his physical healing and spiritual faith. Pray that God reveals himself to Kevin through these difficult time.
If you are local and available on April 14th I ask you to join the walk and come to the party. I would appreciate your donations for the walk. The monies raised are going to ALS Awareness and Research. I hope to become very active with the ALS Association on Kevin's behalf.
I ask for your support here:
http://web.alsa.org/site/TR/Walks/Florida?px=3406385&pg=personal&fr_id=7773An old school picture of lifelong friends:
Kevin was a groomsmen at our wedding:
Kevin and I on Game Day on Junior year of High School:
Kevin with Easton in the Bjorn as we did home visits in Korah~
Kevin and I at Project 61 in Korah, Ethiopia:
Kevin and I at the Sheraton in Ethiopia after we took Easton to get his passport picture taken:
Ryan, Kevin and Easton at the Fistual Hospital in Addis Ababa, Ethiopia:
Kevin and my Dad with their soccer team at Canaan's Children Home in Jinja, Uganda:
Kevin holding sleeping Easton:
Kevin and I with the boys:
1 comment:
Oh how my heart hurts...my dad suffered with ALS for 3 yrs as we slowly watched him lose his strength and speak. It is a horrible disease and I pray they find a cure very soon! It will be a hard road for your friends I pray they have large group to support them. It is wonderful the awareness you are raising and all the help you are giving them. Im praying for Kevin and all of you!
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