Hello we are Ron and Kerry Rivas from Fresno California and Donovan is our son. He suffers from a rare Connective Tissue disease Shprintzen-Goldberg Syndrome. Our goal is to educate people about this disease. There are many complications that go along with this disease the most life threatening is the involvement of his heart. As parents of Donovan we have had to endure substantial challenges medically, financially and emotionally. Our goal is to educate people about this disease. We are currently involved with Johns Hopkins Medical Center as they continue to research this disease. We would like to know what his future may hold for him. Not knowing the full depth of his disease is very scary and seeing the effects it is having on him now we can only imagine what the future may bring. With his heart being affected he has a much higher mortality rate than most. It is something we struggle with on a daily basis. We have always known that Donovan was different from others. We don't look at him any different and love him no less. We have had to learn that he is still a little boy who deserves a normal childhood. Having a special needs child has helped us to grow in so many ways emotinally and spirtually. God gave Donovan to us as a gift and we would like to share that gift with others. With God in our lives he has given us the strength to endure all things that come our way. As parents it is important that we advocate for our children if we don't nobody will. If we didn't advocate for Donovan, he would not have received proper medical treatment. Which could be detrimental to his health.
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