Team Jaxon

“Team Jaxon” profiles the parents of 5-year-old Jaxon Davis, who tell the impassioned story of the brain cancer victim. When Jaxon’s condition deteriorated during a family vacation, they received help from an anonymous family and were able to make it back to San Antonio Texas where they live.

“Team Jaxon” received an Emmy Award from the National Academy of Television Arts and Science’s Lone Star Chapter. The My Real Life Moment™ patient video series was developed as an advocacy tool with the primary focus being to help the families heal by sharing their stories.

Defying the Odds – Living with ALS

The Robertsons share their experiences living with ALS and how their support systems help them. Thank you to the Robertsons, for all you do in the ALS community, and to Kyle and Matt for filming/creating this video.

Now To Tell the Kids…

By Soania Mathur

Time to tell the kids… As I laid down with my youngest daughter tonight, as I usually do while she drifts off to sleep, she looked at me and asked in a tired but inquisitive voice, “Were you born with Parkinson’s”. “Well, it’s a little complicated…” I began. This is just one of many questions I’ve fielded from my girls over the years. “Does your medicine make you feel better?” “How can you swallow so many pills?” “Mama, why are you limping? Did you hurt your foot? ” “Why can’t they find something to make you better?” And my favorite “If I hold your hand forever, will it stop shaking?”

I still marvel at the matter-of-fact nature of the conversations we have about Parkinson’s and the comfortable manner in which our girls discuss this disease. It’s exactly the way I had hoped my Parkinson’s would be perceived by my daughters – as a part of life’s challenges that can be dealt with, not as a frightening life stressor. Children these days are having enough difficulty navigating the world, dealing with school, peer groups, hormones and so on and the last thing I ever wanted was to add to their burden.

Let’s [...] continue the story

The story of a Noonan syndrome family.

My name is Donna and I am mother to 3 wonderful children: Frankie 8, Alex 7, and Lil Pat 4. My husband Pat and I had never heard anything about NS until Lil Pat was born. He has pulmonary stenosis, developmental delay, poor muscle tone, feeding issues at birth, enlarged ventricles in the brain, short stature, and for our Christmas present last year he started having seizures – daily. He has 4 – 10 seizures daily and he will not grow out of them. They are very hard to control with medicine. We are looking towards surgery hopefully in the spring to reduce the number of seizures a day.

At the time Lil Pat was born we had started to notice Alex’s severe speech problem and behavioral problems also began. His speech has since progressed so far that he barely qualifies for services through the school. He has some reading issues but like everything else he works very hard to overcome them. He and Lil Pat started growth hormones 2 weeks ago for short stature. At the time of Lil Pat’s diagnosis of NS, we were put in touch with [...] continue the story

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