“Love is not patronizing and charity isnt about pity, it is about love. Charity and love are the same -- with charity you give love, so dont just give money but reach out your hand instead.” ― Mother Teresa Back in April a friend of mine shared a post on Facebook about a little 7 year old girl in Foley. They were trying to raise money for some medical expenses (treatments) that were coming up on the horizon that would potentially help her with debilitating seizures. Her name is Avery Akins. She is one of the most beautiful children you will ever lay eyes on and she immediately got my attention because she reminded me so much of my 3 daughters. I read her story both on Facebook and her mama’s blog and honestly it made me cry. I had never heard of Rett Syndrome till then. I research everything. Its in my DNA I guess. I spent a few days learning about the disorder from sources online and really was left speechless. I couldn’t stop thinking about this little girl that lived less than 2 hours from me and what I could do to help her. I went ahead and donated some money and tried to move on but I kept thinking about her. They were having a silent auction and I always have more stuff laying around than any one man needs so I picked a couple of items I had collected over time and donated them to the auction in hopes that they would help them reach their goals for her treatments. I again tried to move on but still could not get her out of my mind. Its like she was speaking to me. It was real strange to me why she affected me so much. I donated once more but didn’t want to move on at that point. I wanted to meet this child and her family and learn more about her and what she deals with daily in her fight with Rett Syndrome. A real quick description of Rett Syndrome is , and this is the short story Rett Syndrome: Imagine the Symptoms of Cerebral Palsy, Parkinson’s, Epilepsy, and Anxiety disorders…. All in one little girl. it affects girls almost exclusively. Its considered a rare disease and affects roughly 1:10,000 newborn girls a year. It strikes every ethnicity randomly and it is not genetically passed down. In most cases of Rett syndrome, a child develops normally in early life. Between 6 and 18 months of age, though, changes in the normal patterns of mental and social development begin. Due to Rett Syndrome close to a half a million girls have been robbed of their speech, ability to walk, use their hands, and many other debilitating symptoms. The good news is there is hope for a cure in our lifetime. Lab research has shown progress in reversing symptoms in mice through gene manipulation. The fact that it is a rare disease however limits funds for research and the process is slow. Rett has roughly the same frequency of occurrence as ALS ( Lou Gehrig’s Disease) but has never gotten the same attention because no one famous ever had it as it is a pediatric disorder where ALS occurs later in life. Her mom and I started talking on Facebook messenger about Avery and the treatments, and really just normal stuff about my girls and her kids and so on back before the summer started. In May , on the 25th actually, I registered for the Mississippi Spartan Race for one reason alone. I wanted to do something that took me way outside of my comfort zone to help this child simply because she cant do it herself. Its not even an option for her. A 285 lb computer guy climbing ropes and walls and crawling under barbed wire for 100 yards in the mud is pretty far outside the comfort zone… trust me on this….. Seriously… trust me… With all that said I didn’t want to do it fat.. I wanted to lose some weight and get in shape for the Spartan race on November 8th in south Mississippi. So I went looking for someone to help me meet some weight loss goals and I found B.E. FIT and Brantley Ellison. I started Brantley’s Fitness boot camps on June the 9th at Cycology Fitness in Biloxi and I have to be honest. On the way home from that first bootcmap experience, after sitting on my butt for over 20 years, I almost cried I hurt so bad. I didn’t know what I had gotten myself into and I honestly didn’t think I could finish another bootcamp, much less 8 more weeks of them. I still had not told anyone why I was doing all of this because I wanted to make sure I was going to finish. By the time I got home I had calmed down and remembered the reasons why I started this. My body said quit. My brain said you committed to this so finish what you started. My heart said “What would Avery do if she could?”…. Many times in the first 2 or 3 weeks I asked my self when I was considering skipping a session for no good reason …. What would Avery do if she could? If she was physically able would she walk or would she RUN? My answer was every time… She would RUN and I would start running as far as I could. Eventually it got better and I started to love it. I still do. I always will for the rest of my life. Brantley told me that it would get better if I stayed the course. He was right. Everything he told me was dead on. After 8 weeks I trust him so much now that if he told me to eat a bag of lemons I would swallow them whole and ask him what’s next. After 8 weeks I am in good enough shape to run the Spartan sprint but I don’t want to just run it. I want to OWN it. I want to ring the bell at the top of the rope climb so loud that Avery can hear it in Foley. So I am starting 10 more weeks with B. E. Fit and Cycology next week to drop another 40 lbs and build strength so that when I get to the start line they know I mean business for Avery and her Rett Sisters… Back to Avery… I have some close ties to the Foley / Orange Beach area and am there often so I asked her mom, Carrie, if we could meet Avery when my family were down for a short weekend and she happily agreed. We met Carrie, John, and Avery at the Hangout one afternoon in June after dinner and just visited with them. They are wonderful people. Let me tell you Avery is gorgeous in pictures but she is even more beautiful in person. She has the bluest eyes and blond hair and if she cracks a smile your heart melts right then. She cant talk but she can tell you all sorts of things with her eyes. She can also understand what you are saying. She is a smart girl. Her body is just broken. She has a strong mind and communicates in her own way. She’s a tough little girl. Tougher than any of us for sure. As I drove away from the hangout in Gulf Shores I told my wife I was going to run the race in Avery’s honor because she cant walk or run. I wanted to be another voice for her because she cant talk. I wanted to make people aware of the terrible disorder that stole so much from her so that one day hopefully a cure can be found and Avery and her sisters can claim victory. So here is why I am posting all of this. Spartan Sprint has 15 obstacles and is about 4 miles long. Starting NOW I am trying to raise 1500.00 dollars before November 8th that’s 100.00 per obstacle. I am taking any denominations from pennies to dollars so you can help as little or as much as you want . I hope many of you will see how important this is to me and help me reach that goal. 100% of the money donated will go to Averys medical trust. I am paying all of my expenses myself. I am not just asking for donations. I am also looking for others to run the race with me in support of Avery and her fight. If your on the B.E. Fit Team or Cycology Team you are a perfect candidate Especially If you are already running the race. You can run it for an awesome cause now!! Awareness of Rett Syndrome is just as important as donating. Awareness gets the word out and it may touch someone and move them in to action as it did me. I Challenge YOU to join me in the Spartan race and help make a difference for Avery and her sisters who suffer from Rett Syndrome. Duncan Miller has designed a T shirt for the race just for our team that everyone on the team would be proud to wear. Each Team Members name will be on their shirt as a member of “Averys Army”. Cost will be minimal . Im going to try to get some sponsors to help with the shirts. Ive created a team called Averys Army for The Mississippi Spartan Sprint - Saturday, November 8th 2014 at Muddy Joes, and registration is open now If you know of someone that wants to join up please tag them in this post. The more the better! The Team Rules are : 1. No one gets left behind regardless of your physical ability. 2. We start as a team, We work and support each other as a team, We finish as a team. 3. We celebrate victory at the finish line!!!! You can Donate here. https://gofundme/averycat Make sure you mention Spartan Up for Avery in the comments section so we know its for the race. If you are more comfortable and its more convenient for you to give me cash or checks then please do and Ill make sure that it gets to Averys family quickly. f you havent registered yet, you can register and join the team here: https://endurancecui.active/event-reg/select-race?e=7151954&i=a2390b4b-c931-474d-b3a8-30c985580856 If youve already registered, you can join the team here: https://myevents.active/ You can also find more information at the event website: active/perkinston-ms/adventure-racing/races/mississippi-spartan-sprint-saturday-november-8th-2014 #SPARTANUP #BEFIT4LIFE #HELPOTHERS #RETTSUCKS #FINDACURE4RETT #TOGETHERSTRONGER #ITTAKESAVILLAGE
Posted on: Wed, 06 Aug 2014 16:37:17 +0000
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