Tyler’s story

On January 1st, 1997, my son, Tyler was born with Kabuki Syndrome. It is a very rare syndrome affecting 1 in 33,000 births. As such has many abnormalities including; blind in the left eye, rare corneal growths in both eyes, severe hearing loss in the left ear, bi-cuspit Aortic Valve, grossly dilated left subclavian, horseshoe kidneys, and multiple muscular skeletal abnormalities including fused bones in both feet, pez cavus of both feet etc. Tyler has had 15 surgeries thus far with more to come.

Since Tyler was born our lives have changed. I have learned to seek out the best appropriate medical help, and obtain the right resources in school and now in community college and beyond. Our goal is for him to be self sufficient and thrive in his life.

Tyler lives a full life, going to community, working with the College2Career program, doing an internship at a video film production company, and also working at a hamburger restaurant.

I actively work with SSI, Department of Rehabilitation, College2Career Program and also The San Diego Regional Center to provide the support we need to help Tyler with learning skills to help him thrive through college and beyond.

 

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