Save Our Boy Foundation is a non-profit 501(c)(3) organization dedicated to providing funds for advanced treatments and a potential cure for Duchenne Muscular Dystrophy (DMD), the most common fatal genetic disease diagnosed in childhood (afflicting 1 in 3,500 boys worldwide). Tax ID 27-0615285
Meet Grant...Our Inspiration
Our Boy Grant
Grant was born in June of 2006, weighing a healthy 7 pounds,12 ounces. At every check-up prior to age 2 1/2, doctors noted he was the picture of health and always in the 90th percentile on all the growth charts. He learned to crawl, roll-over, and walk just as you would expect of any healthy boy.
When Grant was two-years old we began to notice his speech was a little behind, so we started speech therapy. We were told by EVERYONE this was very common, especially in boys, and he would catch up soon. As Grant's parents, we also became a little concerned that he seemed somewhat clumsy at times and couldn't run very fast. Doctor's assured us he was just fine...most two-year olds are clumsy. Just before his third birthday, we took Grant for a speech evaluation, where one of the ladies seemed concerned about his muscular and well-defined calves (we had always just thought he had nice calf muscles). After the appointment, we went home and immediately began web-searching. To our surprise, we found that a horrible disease...Duchenne Muscular Dystrophy kept surfacing. We took Grant back to several doctors and demanded testing. The results confirmed our greatest fears.
Grant was diagnosed with Duchenne Muscular Dystrophy (DMD) just before his 3rd birthday. Grant's calves were not filled with muscle, they were filled with scar tissue as a result of overuse and muscle wasting. This muscle wasting will continue throughout every muscle in Grant's body, including his heart and the muscles supporting his lungs. Over time, he will stop walking, stop moving, and stop breathing if a cure is not found. Currently, DMD is 100% fatal. Now, we are in a race against time find a cure in order to save Grant's life.
We were shocked to learn of Grant's diagnosis, as there is NO family history of muscular dystrophy, and we are not carriers. What happened to Grant CAN happen to ANYONE (1/3 of Duchenne MD cases are the result of a spontaneous mutation.) We have decided to dedicate our lives to finding a cure for this disease...so our Grant and other boys all over the world will have a chance at a long, healthy life.
Today, Grant is still a precious boy, full of mischief. He loves swimming, Spiderman, puppy dogs, and race cars. He loves to do everything himself...even it it means spilling orange juice all over the kitchen table and wearing shoes on the wrong feet. He tries his best to keep up with his older brother (although always two steps behind) and copies everything he does. Of course, we wish he didn't pick up some things...like burping at dinner or engaging in high-pitched screaming matches while mom is driving. But, he is a boy and what do you expect. Grant is a joy to have in our lives and he has so much love to share with his friends and family. We want to keep him this way.
Although, there is no cure -- yet, there is hope in raising awareness and funds for research to END DUCHENNE!
Grant's Mommy and Daddy,
Heather & Heinrich