OUR MIRACLE BABY NEEDS A MIRACLE
We are Clara and Gary Diaz and we were married May 22, 2010 in Fort Lauderdale, Florida with many family and friends in attendance. We met at a State Conference (Florida Collegiate DECA), where we both competed in different competitive events. As a former State President of this great organization, I extended my hand to this beautiful young lady as she walked down the steps from the stage after winning Second Place in Human Resource Management. Our eyes met, and we both saw cupid and his arrow. It truly was love at first sight. In fact, our wedding ceremony included our Executive Director, Professor Jack J. Rose, who served as Best Man, since DECA brought us together.
We looked forward to having a family as soon as possible. But, conception did not happen immediately so we sought the advice of a fertility doctor after two miscarriages. The fertility doctor advised Clara to have prenatal injections, which worked since she became pregnant with our first son, Justin.
Our miracle baby, born June 14, 2012 was a gift from God. Early in life, Justin had a speech challenge and was evaluated for a special program. He was accepted into Nob Hill Elementary School, Sunrise, Florida where he was enrolled in a special needs class for three year olds. Justin demonstrated remarkable progress and looked forward to each day of school. We then began to notice a deficit in Justin’s motor coordination and spoke to the a specialist who had him evaluated and placed in occupational therapy, along with speech. Justin participated in all activities even though he had some limitations. He especially loved the assemblies and shows he was part of and enthusiastically sung his heart out. Afterwards, we would celebrate Justin’s achievements.
Justin welcomed his brother, Dominic, on February 25, 2014 and was the first to “hold” his brother when we came from the hospital. Each night, before saying prayers, Justin had to kiss his brother good night.
As our family grew, we were becoming alarmed at Justin’s development. While his speech and motor skills were improving, we knew something else was occurring. We spoke to our doctor who advised a blood test for Justin. The results of the test were something for which no parent can prepare.
The doctor sat us down and stated, that while it was not conclusive, there was a possibility that Justin had Duchenne muscular dystrophy (Duchenne) and further tests were warranted. We took him to the Nicklaus Children’s Hospital in Miami. After extensive evaluations by a multitude of physicians and test, it was confirmed that Justin had Duchenne.
Duchenne is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births. Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.
Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.
Our Plan to Fight
Months of speech and occupational therapy have helped to improve Justin’s speech and motor skills. However, we have hope that a cure will be found so Justin can have a lifetime of health and success and we have committed to partnering with Parent Project Muscular Dystrophy (PPMD) on the quest to end Duchenne. PPMD is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy.
We have already traveled twice to Columbus, Ohio where doctors at the world-renowned Nationwide Children’s Hospital have evaluated Justin. Nationwide specializes in those afflicted with Duchenne and we’re hoping that Justin can become part of an upcoming trial that will be forthcoming. He is small for his age, but he is a trooper enduring blood work, tests, therapy.
While Justin will always be our Miracle Baby, we are pleading with everyone to support Parent Project Muscular Dystrophy. If we unite, there can be an end to Duchenne.