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You may or may not know October is Rett Syndrome Awareness month. My sister, Siera has been fighting Rett Syndrome since her diagnosis on June 29, 1990 when she was 2.5 years old.
Rett Syndrome robbed Siera of being able to make and acheive goals and dreams for her life and it took from me the normal relationship a brother and sister share. Instead of fighting with Siera I have often fought for her. While I had soccer, basketball, baseball and football to look forward to, Siera had physical, occupational, speech and music therapies to endure. I like to think she enjoyed going to my sporting events while I dreaded going to her surgeries in fear she wouldn't survive. In a way it is Rett Syndrome that has made me a better, stronger more compassionate person but I would have preferred to have gained these skills without Siera being trapped in her body. Watching Siera face day to day and sometimes minute to minute battles with Rett Syndrome has taught me not to take anything for granted. Her strength and determination against Rett Syndrome has made a huge impact on my life and she is a true inspiration to me in all I do.
One of the hardest things for me as Siera's brother is the ignorance Siera faces every time she leaves the house. The hardest is dealing with all the stares and rude remarks that people make about her in public. People who don't know Siera personally probably think that she doesn't even notice when she is being stared at or that she doesn't understand what they are saying. In fact, it is the exact opposite. Whenever we are in a place where there are a lot of people staring at her, she becomes extremely nervous and anxious. The only way to get her to calm down after becoming so worked up is to remove her from the situation. Over the many years of dealing with this type of problem I have become very good at shielding her from the unwanted stares by simply putting myself in between her and the people staring at her so they can't see her. Sometimes it even takes me saying something to those staring in order for them to stop.
I was asked to participate and be HER Knight--HER standing for Helping to End Rett--and am honored to do so.
What is Rett Syndrome? It is a devastating neuro-developmental disorder that occurs mostly in females. It is usually caused by a mutation of the MECP2 gene on the X chromosone. RTT is found in all racial and ethnic groups throughout the world, and in every socioeconomic class. RTT affects 1 in 10,000-15,000 live female births. Early developmental milestones appear normal; between 6-18 months of age, there is a regression, affecting speech, hand skills and coordination. A hallmark of RTT is repetitive hand movements that may become almost constant while awake. Other features may include seizures, irregular breathing, difficulties swallowing and curvature of the spine. Many individuals with Rett Syndrome live well into adulthood. There is currently no cure.
By making a donation you will help researchers continue towards important advances in finding the cure to Rett Syndrome. Some research developments include:
Gene discovery in 1999
Animal Models created in early 2000's
REVERSED in a mouse model in 2007
iPS cell lines created in 2010
for more information on current research please visit www.rettsyndrome.org
Please consider making a donation either online or contact me to do offline.
Your Help is Every Rett girls Hope.