Anna Gutierrez was born July 25, 2008, and heroically lived with Rett Syndrome until her passing on September 5, 2012.
For her mom and dad, it is very clear that Anna would not have us suddenly walk away from the Rett community and leave behind friends whom we love and care so much about.
There are many Rett families who we know personally and love dearly, and not just because they have so much loved us through diagnosis, regression, surgeries, hospitalizations, medications and feeding tubes, seizures, pneumonias, and ultimately Anna's passing from this Life onto the next, but because we understand each other in a way no one else in the world will.
Inspired by Anna, we run for these families and their daughters who wake up and go to sleep everyday with this terrible disease and who have no choice to quit. After taking some time to catch our own breath, we asked, why would we run again? We believe that a cure for their girls -- our girls -- is attainable.
This year, Team Anna Banana includes dad Manny, mom Stefanie, childhood friend Kathy and cousin Sammy. Anna's big brother Gabriel joins us, running his first 10K. Our team also includes our group of family and friends who so selflessly rallied around us and supported Anna in ways we are forever grateful, and continue to support us.
Anna appeared "normal" at birth, but everything changed between six months and her first birthday. She could no longer sit on her own, lost what little verbal communication she had, and could not walk. After months of seeing specialists and genetic testing, we received her diagnosis. That year, she went from eating cheerios in April to needing a feeding tube in August. Her regression was fast, and she was trapped in a body that did not work the way it should have.
Despite her daily struggles, Anna communicated through eye gaze and was very much a little princess inside. Her favorite movies were "Snow White," "Tangled" and "Beauty and the Beast." She slept with her Belle doll every night. She was a fiesty and funny gal who also loved dressing up and going to school and being with her friends.
For every step it takes us to complete 13.1 miles, we will think of Anna's Rett sisters, who would give anything to take even one. It brings us some consolable peace to think of Anna walking and running all over Heaven.
In February 2012, when we ran the half for the first time, Anna was in her wheelchair. In 2013, when we ran just 5 months after her passing, we knew she was running with us in spirit. In 2017, we know her spirit continues to drive us, and we believe it because of her that we are even doing this againâ€¦
She has granted us special signs; Belle was her favorite Disney character, and this year's theme is what else? "Beauty and the Beast."
For the girls living with Rett, we continue to have hope. Researchers have found that Rett Syndrome is reversible, and we know a cure is out there. It is not a matter of IF, but a matter of WHEN.
We thank you for your tax-deductible donation to help support us in finding a cure for Rett Syndrome!