Awareness is not enough. Awareness + Action + Alliance + Advocacy= A victory against Rett Syndrome

October is Rett Syndrome Awareness Month.Out of curiosity I visited http://www.awarenessdepot.com/awarenesscalendar.html to see what other issues also have October as their awareness month. I knew that Breast Cancer, Celiac Disease and Down Syndrome have October was their Awareness month, but was surprised to learn that it’s also Elephant Awareness month. So I then began to think about what Awareness means.     Webster’s dictionary defines Awareness as: knowing that something (such as a situation, condition, or problem) exists : feeling, experiencing, or noticing something : knowing and understanding a lot about what is happening in the world or around you.         I know that many people are still unaware of what Rett Syndrome is so I began posting facts about Rett Syndrome on my Facebook page and sharing information when I’m out with Tabby. While at a music festival recently Tabby saw a band named Mike Hicks and the FUNKtional PUNCtuation and she began trying to clap to the music which is very difficult due to Rett Syndrome. I decided to take her to meet Mike and share what his music inspired her to try. He was trilled and as I told him more about Rett Syndrome he was interested in knowing more about what he could do for Tabby. I told him about the fundraiser to purchase Tabby a running chair and how this would allow us to raise money to find a cure for Rett Syndrome. Mike and his band immediately donated the remaining $400 needed to purchase the chair. When I told Tabby’s mom the good news she asked “why would someone do that for someone they just met?”. This made me think. Mike and his band put their Awareness in Action. This Action along with those of the others who donated to her fundraiser made them Allies with Tabby in her fight with Rett Syndrome.

Mike Hicks
Mike Hicks

This Action increased my desire to spread Awareness so that others will be moved to take Action and come together as an Alliance against Rett Syndrome. Webster’s dictionary defines Alliance as: the state of being joined in some activity or effort : the state of being allied: a relationship in which people agree to work together. Over then past year I have begun connecting with others via social media that love someone with Rett Syndrome. Some of these are family members, some caregivers, and some friends, but together we are an Alliance. I like to say we are family by bond instead of blood.

The most important part of having this Alliance is that we can Advocate for those with Rett Syndrome. Advocacy is defined as: the act or process of supporting a cause or proposal : the act or process of advocating something. An Advocate is : a person who argues for or supports a cause or policy: a person who works for a cause or group. Since most Rett Syndrome sufferers have lost their ability to speak having a someone to speak “for” them is extremely important. I believe that anyone who takes the time to connect with a Rett girl and/or woman would be inspired to become an Advocate and make sure these voices are heard. Among those that I have met in the Rett community one stands out; his name is Duncan Millar. Duncan volunteers his time and talent to create beautifully captioned images from the over 1500 photos sent to him from those who love a Rett girl/woman. He has assisted these girls/ladies in having a voice with his blog http://armyofus.org/blogs/duncan/ and https://www.facebook.com/Armyofus . He is Godfather to a girl with Rett Syndrome. Through his work in “Army of US” he has reached the hearts of those around the world. With this growing Army against Rett Syndrome we come closer to a victory, a cure.

There are so many ways to join us in the fight against Rett Syndrome all it takes is to do more than be aware. Take Action- Donate to research toward finding a cure http://www.rettsyndrome.org/make-a-difference/donate-now.  I realize that for many making a financial contribution is not possible so I’m asking you to make a different type of donation. Make a donation of your time, your heart, and your friendship. Join other Allies and help with fundraisers or go to http://www.girlpower2cure.org/how-to-help.aspx to see how you can help. Be an Advocate. Find out how you can meet a Rett girl/woman and take her to the park or to dinner. Send a note of encouragement to someone with Rett or their families to let them know you care. Host a girls night in where you invite your friends and Rett girls/ladies for a night of watching movies, painting your nails, and just hanging out. There are so many ways you can help that don’t require anything expect your willingness to care and some of your time. Believe me when I say that not only will you be helping those with Rett Syndrome you will be helping yourself to see the things you take for granted. Being Tabby’s best friend has changed by life for the better and made me appreciate every day.

created by Duncan Millar
created by Duncan Millar
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Same different as me.

Girl powerRett from 4 to 41Tabby and Rubygirl's best friendGreat day

One of the most valuable lessons I’ve learned from Tabby is that making and being a friend doesn’t require words. That was never more true than today as I watched a 4 year old and a 41 year old become instant friends even though neither of them could speak a word. Tabby met Berkley and her family today in Franklin,TN. Berkley is a spunky 4 year old girl who, like Tabby, daily battles the Rett monster. This is the first time Tabby has met someone like her who has Rett Syndrome.  The pictures I got did not capture the their initial meeting that was full of smiles and lots of communication using nothing but the eye contact these girls depend on to express themselves. By the time I remembered to take pictures Berkley was in need of a nap and Tabby was in need of lunch. It’s touching and somewhat bittersweet to watch two females with so much personality have to wordlessly communicate because Rett Syndrome has stolen their voices, but to see the joy that comes when they realize “this girl is the same as me”. Berkley’s family was having a yard sale today to raise money so they can purchase a Tobii Eye Gaze for Berkley since insurance denied their request for funding. Tabby is still waiting to hear if Medicare will approve her funding application for a Tobii. The Tobii Eye Gaze is a computer system that tracks the movement of the eyes and communicates what the eyes have chosen. For those with Rett Syndrome this is the only accurate / non-subjective way they can communicate. Imagine these two new friends being able to have a conversation with words and for Tabby who has experienced the frustrations of growing up with Rett Syndrome to be able to advise, support, and comfort Berkley in the coming years using this technology. Just thinking about it makes me smile. For now though Tabby and Berkley are taking back from Rett Syndrome the knowledge they are not alone in their struggle. This is only one of the many new friendships Tabby plans to make in the coming years with the other females that battle Rett Syndrome and their families who daily pray for a cure. Tabby was also excited to make a new canine friend in Ruby the cocker spaniel ( Tabby would be upset if I didn’t mention that she also plans to make several new canine friends) . The smiles and giggles Tabby had as I recounted our day to her parents was enough to let me know how special meeting Berkley, her family, and friends was for Tabby. Along with making a friend in Berkley we were also able to spend time with Bee’s amazing parents Christy and Jeremy. I love how much hope Tabby brings to parents of the young Rett girls just by being a happy, healthy adult. I have no doubt that today was the beginning of a beautiful friendship that will result in Bee’s parents and myself increasing Rett Syndrome awareness, funding for a cure and reaching out to connect and provide emotional support those whose lives are effected by Rett Syndrome. I hate Rett Syndrome, but I love my Rett family.

I would like to personally request that all who read this blog post donate $10 toward Berkley’s Tobii fundraiser at:

http://gofundme.com/berkleys-tobii

Pooh:piglet

Tabby gets a haircut

lookin goodside view 2side viewthat's alot of hair

There are so many basic activities that are made difficult for Tabby due to Rett Syndrome. For most of use getting a haircut isn’t stressful and can actually be relaxing, but due to Tabby’s scoliosis, ataxia, and neck stiffness caused by Rett syndrome going to the salon is emotionally taxing. Until recently Tabby’s Dad would cut her hair because her parents were concerned that a stylist would be unable to understand that Tabby isn’t purposely being difficult, would become agitated, and making Tabby embarrassed. I began to talk to my stylist and friend, Kelsey West, about having her cut Tabby’s hair and she said “of course, it would be my pleasure”. Today was Tabby’s second visit to Salon West. The first visit Tabby just got a trim so she could become acquainted with Kelsey. Today Tabby got several inches cut off. The process was frustrating for Tabby because as much as she would like to be able to hold her head straight and look down when asked her body will not respond to these desires due to the effects of Rett Syndrome. Thankfully Kelsey is patient, sensitive. and a skilled stylist. The final result is this adorable bob. Today was a win for Tabby over Rett Syndrome. Tabby put the Rett in Pretty.

Ready to roll

https://www.crowdrise.com/tabbyAdvanced Mobility Freedom Chair-01 Several months ago I began looking for a wheelchair that would enable Tabby to join me on my runs especially since she is my motivation to run. So at long last we have partnered with Ainsley’s Angels to start this fundraiser to get Tabby a Freedom Push Chair. Tabby asks that you visit www.crowdrise.com/tabby and donate to make this dream come true.

Taking fun back

Tabby on the YoYoJust a swingin'I can see my house from hereIMG_2385

Rett Syndrome has stolen Tabby’s ability to speak, use her hands, and walk unaided but she has decided she is taking FUN back. At the Wilson County Fair and Tennessee State Fair this year Tabby was able to ride more rides than ever including the Rock n’ Roll which she loved because of the Hip Hop music playing as she rode. Most fair rides aren’t easily assessable to those with mobility difficulties so in the past we would just watch others enjoy the rides. Over the last year Tabby has been working hard in physical therapy to be able to walk with assistance and step up onto stairs. This hard work was rewarded when she was able to get onto several rides this year. Being able to see the initial uncertainty in her eyes turn into excitement and thrill made me see something as “normal” as riding a Ferris Wheel as a victory for Tabby against Rett Syndrome. Not only did Tabby take this fun back from Rett Syndrome but by having the courage to try she also impacted the lives of the ride operators. One gentleman told Tabby “Thank you for making my day. Your courage made my heart happy”. I truly believe that if every person would spend time with a female who has Rett Syndrome the finances needed for researchers to find a cure for Rett Syndrome to be reversed would be reached in her lifetime. Let Tabby inspire you to ask yourself “is it that I can’t or that I won’t”.