Please consider donating to Ryan's Hope in honor of our son Ryan. Ryan is 14 years old and has been in a wheel chair since 2 weeks before his 8th birthday. Ryan has the most severe form of a nasty neuro muscular disease called Duchenne Muscular Dystrophy. Ryan was diagnosed at the age of four after we went to his pediatrician with concerns that he was not active like his siblings were when they were his age and other signs that something wasn't right. After several visits insisting that something wasn't right the doctor took a look at Ryan's legs and said they suspected Muscular Dystrophy. We were referred to a pediatric specialist in Muscular Dystrophy and was told on the first visit with the specialist about the disease. Blood tests confirmed our worst fears. When the doctors called us back in to confirm the diagnosis, the room went dark as I heard my wife sob with grief. Our lives have forever been changed.
Today, Ryan cannot do anything for himself as the only extremity muscles left working, albeit weak, are his fingers, so he can still play his video games.
Boys with Duchenne are typically diagnosed before the age of five. Their muscles swell and joints become restricted. They are easily fatigued and have difficulty keeping up with others their age. Most Duchenne boys need a wheelchair between the ages of 10 and 12. The simplest of tasks, such as holding a fork or turning over in bed, becomes very difficult. In the later stages, heart and breathing muscles begin to fail. Historically, most boys with Duchenne have not survived their teens.
One in every 3,500 boys worldwide (an estimated 20,000 babies annually) is afflicted with Duchenne muscular dystrophy. The disorder affects all ethnic and social groups. The gene mutation that causes Duchenne is usually passed from mother to son, but fully one-third of cases are spontaneous. This was the case with Ryan. The doctor said, Ryan was one in a million fluke at conception.
There is currently no cure…and it can happen in any family.
Ryan is the joy of our lives and keeps us laughing along this journey with him. He is one of thousands of boys with Duchenne's that is fighting for the right to grow up.
Thank you for your consideration of donating. No amount is too small. Simply click on the link under the title to go to Ryan's Hope home page. Thank you for your support.
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