Welcome to AVERY'S ARMY RETT RIDE ACROSS AMERICA TEAM
I am participating in the Rett Ride Across America – a cycling event to raise awareness and funds for Rett syndrome. This cause is near to my heart and themoney raised will fuel research toward effective treatments and a curefor Rett syndrome.
What is RETT SYNDROME from my simple perspective?
Its 1 in 10,000 baby girls who won’t get the same chance as the rest of our daughters do at a normal life.
Its beautiful children that at first seem normal but eventually , by 2 most of the time , start to lose the ability to Walk, Talk, eat by mouth, use their hands, Play with Toys and everything else our kids do.
Its spinal fusion surgery, foot surgery, leg surgery, VNS implant surgery, surgery to insert a feeding tube, many times multiple surgeries on the items above, More surgeries I haven’t mentioned… In Avery’s case… this is all before she is 10 years old. Here is something else. Avery is “healthy” compared to many girls with Rett Syndrome. Other than her seizures in the world of Rett Syndrome. She has it “good” compared to some.
Its emergency hospital stays with pneumonia, Its emergency room visits because she gets aspirated just by eating sometimes. Its your daughter getting sick and not being able to tell you what’s wrong. where it hurts, how long its been hurting.
Its seizures that will make a grown man cry just to witness when one hits her. Its narcotic medication given to a child , that in multiple times in adult dosage to help fight seizures and it only mildly helps. They still come.
Its Wheelchair vans, Wheelchairs, orthotics, and many other things to help make her and your life easier that most of us who don’t have a special needs child can’t even afford
Its going to therapy multiple times a week and even when it seems like its not helping you go anyway because progress is slow but its progress.
Its going to school and being treated different sometimes. Its being treated different in restaurants, Its stares in the mall.
Its a beautiful child who is strong in her mind and can understand what we say, She can hear you , She can respond to you in her own way if you take the time to learn her language. She uses her eyes, Mannerisms, etc to “talk”. again, her brain works. In non medical terms Rett detaches her ability to control her body with her brain. The thought to use her hands is there but they hands don’t do as commanded.
Its smiles and an occasional laugh from her that melt you instantly.
It turns children into WARRIORS who FIGHT every single day to get better and defy it. Its many times 1 step forward and 2 steps back. But then a step forward again. Its not quitting, not because you don’t want to. but because you can’t. because its not an option.
Its considered rare and you likely have never heard of it unless you know a family affected by it. 1 in 10,000 girls. While considered rare, That’s too many.
Its widely believed to be curable / treatable with more research. Lab test in mice have produced positive results in the last several years, pharma trials, more research, and awareness are key to curing it.
Avery’s Army is about Awareness. Its about stepping up and raising awareness and fighting for Avery and the other 1 in 10,000 girls. We raise money for research for a cure, We raise money for organizations that provide support and education for families affected by Rett Syndrome.
How did we get started? The short story is once I met her she changed my life in ways I cant describe. She pushed me to be better simply because I could. Because It was an option for me to get up and lose some weight and become active. I chose to start running for her and have had a lot of other people join me and we all run for her and the other 1 in 10,000. To raise awareness. To let people know. Avery and the other 1 in 10,000 have to overcome obstacles every day they wake up. They cant skip them. They cant quit. If you are part of Averys Army … you can’t quit either. Its not authorized. It never will be.
Your donation will help fund important research and critical family support. This cause is very important to me and I appreciate your help as we fight for a cure for Rett syndrome!
Please join me or donate to my efforts to support Rettsyndrome.org in finding a cure!
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