10-Year-Old Isaiah Donaldson Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

It has been nearly 11 years since our lives changed forever. We were so excited, on our way to find out if we would be blessed with a boy or girl. Our biggest concern was the name. I remember it just like a movie, sitting in the office and finding out that we are having a BOY!!! And then the SILENCE it seemed to last forever….. the doctor said something isn’t normal. From that point on all I remember is hearing the word HYDROCEPHALUS and that we needed to be seen for more tests immediately. I knew that hydrocephalus was “water on the brain” but that was it.

I remember sitting in the parking lot of the office crying hysterically in my husband’s arms. Within the next few days we had an MRI done at Nationwide Children’s Hospital. This was the worst day of my life. The neurosurgeon said that our child had a very severe case, quite possible the worst he had ever seen. He told Steve and I that our son would NEVER WALK TALK OR COMMUNICATE in anyway, we would be changing diapers for the rest of our lives. He suggested that we “just try again” Of course that was never an option!! And we never saw that doctor again.

4 months later we were blessed with the most precious little boy in the entire world, our sweet Isaiah. About 2 months before he was born I had a dream that I was holding a beautiful baby boy in my arms. He had curly dark hair and the most amazing blue grey eyes. In my dream I knew his name was Isaiah….which means God is salvation. I am BLESSED to have been chosen to be Isaiah’s mommy and thank God every day that he was given to me.

Isaiah spent 45 days in the NICU. He had a VP shunt placed when he was just 9 days old. He still has his original shunt. He has never had a replacement or revision. We continue to have routine MRIs and monitor closely. We recently learned that his shunt is no longer in its original placement position and he has slit like ventricles. We know that this can lead to another brain surgery, and another and another. And we NEED A CURE!

Isaiah loves Thomas the Train and video games. He is an amazingly creative artist, who loves to make his own Marvel Mash Ups. He always has a smile on his face and is the best big brother. He is rocking out 5th grade and even made the Honor Roll. Isaiah is super excited and honored to be the 2022 Hydrocephalus Ambassador and can’t wait to help spreading awareness. He hopes that he can share his experience and help other kids, showing them how to be brave and to never ever doubt your abilities.

6-Year-Old Alabamian Lillian Alberts Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Lily was born July 14, 2015 with her twin brother James. Her parents received the news at their anatomy scan that not only did Lily’s twin have Spina bifida, but both twins had congenital hydrocephalus. At three days old, she along with her brother received their first VP shunt placement. At ten days old Lillian got to come home with her brother and begin learning and growing. There was a slight bump in the road at seven weeks old, when Lily had her first shunt malfunction, which ended up being a 20 day hospital stay with two infections and four surgeries.

Thankfully Lily has had no issues with her shunt since! She has overcome much, including being diagnosed with epilepsy and dealing with some physical challenges. Yet through the help of the Drs and specialists at Children’s of Alabama, Early Intervention, Therapists, teachers, friends, and family, Lily has thrived and become an energetic, fun loving 1st grader.