Starlight Families Share
In January 2005, my family's life changed forever.
Up until that moment, we had led a happy and healthy life with minimal issues. Both my kids - my daughter, Charlize, and my son, Sean - had grown normally, developed right on schedule and hit every milestone. Charlize was a typical toddler and my pregnancy with her young brother, Sean, was also typical.
We entered our new world AFTER Sean was born. His first few days of life were difficult, but we managed to pull through. Doctors could not control his blood sugars and had no idea what was going on or why. When we finally took him home, I was told to learn about Type 1 Diabetes because Sean would eventually develop it. What a scary thing to deal with when you are bringing a baby home for the first time! Over the next few months, I researched symptoms - frequent urination, excessive thirst, fruity smelling breath, a lack of energy, not feeling well, weight loss and mood swings - however, I tried not to worry too much. We had no history of Type 1 Diabetes in our family.
In July 2004, we moved from California to Arizona. It was a big adjustment for everyone. We had a lot of change going on in our lives and my very sweet-loving daughter was surely showing the effects. Read more.
At the age of 12 my world was flipped upside down. Severe pain, vertigo, tremors, and muscle loss led to many hospitalizations and countless different diagnostic tests and specialists, all leading to no answers. After two and a half years the doctors had given up on me and wrote me off as a psych case.
When I was 14 my dad got a job opportunity on the other side of the country in Arizona. Little did I know what God had in store for me how many questions would soon be answered. Shortly after getting settled I had to be pulled out of the 8th grade due to uncontrollable pain. Once again the doctor hunt continued.
After a few months of searching, a chiropractor suggested we go to see a rheumatologist because I had “super human stretchable ligaments.” Within minutes of walking into his office he had a diagnosis, he said it was painfully obvious I had Ehlers-Danlos Syndrome. As he explained the condition, not only the past few years made sense but so did the small things that had been going on my whole life, including random bruises, “growing pains,” and shoulder and ankle problems that we learned later were dislocations. Read more.
David and Amanda have five beautiful children -- Todd who’s 14, Ryan 11, Hunter 8, Jason 6, and three-year old Alexander. Needless to say, the children have always kept their parents busy with carpools, homework, after-school activities and the happy chaos that comes with a family of seven!
Their busy life came to a shocking halt last October when Alex was diagnosed with Dandy Walker Syndrome Variant, a congenital brain malformation. In an instant, Alex’s diagnosis changed the lives of everyone in the Brown family. This is their story, as told by father David Brown.
Since shortly after birth, our youngest son Alex was an unusually cranky baby, and nothing we did seemed to soothe him. My wife could never put him down, and he would only go to sleep if she rocked him. Then, when he was four months old, his head circumference began to grow much faster than the rest of his body and by nine months old it was off the charts. Amanda and I had raised four other children, and we knew that something wasn’t right. But no matter how hard we pushed, Alex’s pediatricians didn’t see any cause for alarm. They told us to “keep an eye on it” and didn’t run any diagnostic tests. Read more.