A Letter From Lyle
Dear All,
I felt that now is the right time to inform everyone of some unfortunate news. I’ll get right to the point. In November of 2017, I was diagnosed with Brachial Amyotrophic Diplegia (BAD). BAD is an atypical form of ALS. The disease is affecting my shoulders, wrist, elbows, hands, etc… At this time, it is not affecting any other areas. Any of you can certainly research what this disease can do/cause. The bottom line right now, my arms are getting weaker making things a little more difficult to do daily activities, such as buttoning a shirt, gripping a coffee cup, or doing anything above my head.
My sisters have always told me that I am the luckiest guy they know. Well, actually, I think they are right. I have always seemed to have fortunate luck in life. I will give myself some credit and say that hard work may have helped earn some of that good luck. Honestly, I would obviously prefer not to have this disease, but I feel lucky that my disease does not progress as rapidly as the traditional ALS. This disease, so far, has not changed my life very much at all. I asked the doctors what I need to change and their response was nothing. Live your life. Well everyone, that’s the plan. I have hung up the basketball shoes, put away the softball bat, and now wear running shoes for everyday use, but I am still the same person and have the same attitude on life and still work as hard day to day. I still coach my son in basketball and baseball and love it. I still try to keep up with my daughter in the driveway bumping or setting the volleyball. I don’t intend to let this disease affect any of that.
What has changed is the love for family, friends, colleagues, and life. Don’t get me wrong, I loved and appreciated all of those before I found out about this disease but now it forces you to focus on what is most important in life. We all hug each other a little tighter these days. Not a day goes by without me hugging my wife Sarah a little tighter and making sure my children Laurel and Carson know how much they are loved.
Sarah is an absolute rock star. She has become such a strong person through all of this. She has shed many tears but I am amazed by how much strength she has shown to all of us. As my strength has deteriorated, hers continues to get better and better. We were in the middle of an addition at our house through all of this news, needless to say, I think she could build a house herself. The kids are fantastic at demo and are learning the benefits of hard work as well. I think anyone with kids could understand this, but the kids are what chokes me up the most these days.
My parents are rock stars as well. I know this has been tough on them, rightfully so. I am extremely lucky to have such supportive parents and in-laws. I have learned so much from my parents. Kindness, hard work, a positive attitude, and competitive mindset are just a few. Those are all traits that have helped me become successful in life and I am so appreciative of how supportive they are now. I can remember getting mad at my dad for taking tools out of my hands when I struggled with something, nowadays, I am happy to hand him the tools when I need help. I love you mom and dad.
To all past and present friends/teammates, I am sorry that some of you will hear this news for the first time with this letter. This is not the way I would prefer to do this, but life is too busy to meet with all of you these days. Quite frankly, this is a much easier way to get the message out there. I will be up front with you, I am not good with responding on Facebook. I like seeing everyone from time to time on Facebook, but it is not something that I look at very often. So, accept my apology if I do a bad job of responding to your messages. I respond much better these days with phone calls and hugs. Please reach out to me, I am not looking for sympathy but I have always been good at laughing together with people.
Please know that I appreciate you just taking the time to read this. Sarah and I love getting together with friends these days. You guys know who you are. Thanks to you for the love and support through all of this. We couldn’t do it without you.
Where do we go from here? Well, since you asked. I work for/partially own this awesome company called United Services. We have some amazing people who own and work for this company. We have done and continue to do some crazy good things at United Services. One of my best friends/business partners is phenomenal at bringing good people together for getting things done and accomplishing amazing things. That’s where we go from here. We have started a foundation called Lyle Rakers Charitable Foundation. Our goal is to raise as much money as possible to go to the Miller Lab at Washington University. All proceeds will go to Tim Miller, head of ALS research, dedicated to understanding neurodegenerative diseases such as ALS in order to develop new, effective and safe treatments.
Please help us join the fight to find a cure for ALS. We have decided to have an annual golf tournament to raise funds for the Miller Lab and their research. It would mean the world to me to make this a huge event and make a difference in mine or someone else’s life who is suffering from this disease.
Thanks in advance for listening and caring. I truly appreciate it.