by Jessi-Scott Backer
On February 7, 2006 our second child was born. A beautiful baby girl with blonde hair, stunning big blue eyes and extraordinarily fair skin. A perfect angel we thought. Little did we know that the next several weeks, months and years of her life would prove to make that term of literal significance in our lives.
Today, Brooke is a 7 year old vivacious little girl. Continuously smiling, playful and willing to share a hug or kiss with anyone she can get her hands around. But life for her can sometimes and often does, throw us a curve ball. You see, she has Angelman Syndrome (AS). AS is a severe neurological disorder characterized by developmental delays, problems with motor coordination and balance, life threatening seizures, and little to no speech. Doctors told us that Brooke would probably never walk or talk and most likely suffer from debilitating seizures for the rest of her life. Determined to beat the odds we began an aggressive therapy regimen and at 3 ½ years of age she took her first steps. At 4, she began to use simple signs to communicate and now, at 7 years of age, she is combining the signs and the use of a voice output device to communicate her wants and needs. Seizures continue to be a problem for Brooke but close monitoring and medication help to minimize the episodes.
As parents of a child with AS we look towards a future where a cure is imminent. At the Foundation for Angelman Syndrome Therapeutics (FAST) the goal is to find a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy. In order to help support this goal, “Be a Hero, Save an Angel” was born. We are a Florida based family trying to do our part for FAST. As family members we are working together as a small part of the bigger picture by creating events that not only spread awareness about Angelman Syndrome but also raise money for FAST.
To kick-off our fundraising efforts, on Saturday, June 1, 2013, we will be hosting the 2013 Be A Hero, Save An Angel 5K Fun Run and Walk. The 5K will be held at Zoo Miami from 7 a.m. – 11 a.m. 100% of the proceeds will be donated to FAST. We encourage everyone to come out in your best super hero costumes and do your part. Once you cross the finish line we will have refreshments, light snacks and music. Additionally, following the run, all participants will be able to enjoy the rest of the day at the Zoo as part of the registration fee.
So whether you’re a running enthusiast, or just need an excuse to see animals, come join us to raise awareness for Angelman Syndrome and to support a great cause, FAST. The world always needs more heroes, and this is your chance to be one. Answer the call.