Our mission is to educate the community about Shprintzen-Goldberg Syndrome. It is essential that early accurate diagnosis is made for these patients. We are currently involved with Johns Hopkins Medical Center and National Institutes of Health (NIH) as they continue to research this disease. There are many complications that go along with this disease the most life threatening are the involvement of heart and upper cervical spine instability.
Our son Donovan suffers from a very rare life-threatening Connective Tissue disease Shprintzen-Goldberg Syndrome (SGS). There are currently less than 70 cases world wide. As parents of Donovan we've endured substantial challenges medically, financially and emotionally. 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've learned that he is still a little boy who deserves a normal childhood. Having a special needs child has grown us in so many ways emotionally and spiritually. God gave Donovan to us as a gift and we would like to share that gift with others. This is why we have started this non-profit organization. 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.
Video has been updated as of January 08, 2016
We have included images so you can see how he has grown and the process that this disease has taken on his body. This disease at current affects his body inside and out.
Please take time to read the About page as it goes in depth about Donovan's Disease. We have included links to further educate you on some of the secondary symptoms of this disease.
To support Donovan's Disease and make a donation please go to the Donations page and for current Fundraiser info see the Fundraiser page. We are a non-profit 501(c)3 charitable organization.