BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2013 Boston Marathon
Our sweet little Leah was born February 22, 2007, simply perfect. Her first year was a dream. She ate and slept so well and learned to do so many things on her own and say so many words and phrases. It took her a little longer than normal to crawl, cruise and walk, but her determination got her through with a smile on her face. She crawled at 19 months and walked at 26.
Just around the time she began walking, we noticed a few words disappearing. She was enrolled in an early start program and it was her teacher there who suggested that we get Leah tested for Rett syndrome. So we did, and our lives were never the same.
I still remember receiving the phone call from Leah’s neurologist on October 30, 2009 that made me drop to my knees on my kitchen floor. My daughter had Rett syndrome. It wasn’t something temporary, something she’d grow out of, something we could overcome through therapy.
Over the next few months, Rett syndrome took Leah’s words and hand use, but it did not take her spirit. Her smiles and giggles can still melt anyone and her bright blue eyes twinkle on the darkest of days.
Leah is now attending kindergarten where she is mainstreamed with a one-on-one aide to help her through her day and keep her safe. She loves learning and loves being with all of her friends every day. She works so hard that a full day of kindergarten simply exhausts her and she often falls asleep on the bus ride home. She loves spaghetti and swimming, her baby sister and sunshine, playing in the snow and swinging. You can always count on a laugh from Kung Fu Panda and she’s pretty convinced she is, actually, Rapunzel.
Leah began suffering from seizures when she was four years old and, although this drains her of a lot of energy, she gets right back up and fights through her days. She is still in diapers, is spoon fed every meal and needs others to help feed her, brush her teeth, bathe her and participate in all other daily activities. She can no longer flip the pages of her favorite books or play with her favorite toys. She can’t vocalize the things she imagines or the questions she has every day. And, unless a cure is found, she never will.
But we believe there is hope that treatments and a cure will be found! Researchers have reversed the symptoms of Rett syndrome in mice. Their work has opened doors to a host of other disorders such as autism and Parkinson’s disease. Two human clinical trials are currently in place and more could be coming. Raising money for the Rett Syndrome Association of Massachusetts will help these dreams become a reality that much sooner.
We have learned so much of patience, kindness, hard work, determination, laughter and love from our sweet little Leah. Though she still walks, she can’t run a marathon. And so we will race for her. Because we believe in her. We have hope that one day, she will run a race - completely different than the one she runs every day of her life.
Thank you for your support!
RETT SYNDROME ASSN OF MASSACHUSETTS wrote -
Team Rett FundRacers will be raising money for research in hopes that Rett syndrome can be reversed!
Seen almost exclusively in girls, Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000 females. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors.
Although Rett syndrome leaves all girls and women dependent on others for all of their basic needs, tremendous advances in research have been made since the MECP2 mutation was discovered in 1999.
Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!