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.

SPRING HILL, Tenn. (WZTV) — A Tennessee boy suffering from an incurable brain condition has been chosen as a 2020 National Ambassador of Hydrocephalus Awareness.

Hydrocephalus is a condition where excessive fluid gathers in the brain, widening spaces and placing potentially harmful pressure on brain tissues. According to the Pediatric Hydrocephalus Foundation, Hydrocephalus occurs in approximately one of every 500 births. Untreated, it could be fatal.

Jaden Stallbories of Spring Hill was diagnosed with the condition in 2014 at just 3 years old. He has survived four life threatening brain surgeries due to the fluid buildup in the brain.

“If you look up the definition of survivor, there’s a good chance you would see a picture of Jaden featured,” the Pediatric Hydrocephalus Foundation said. “Everybody that has met Jaden will tell you all about his sense of humor, and how he is such a sweet little boy. Throughout everything that he has endured, he still smiles and laughs. He has never let anything dim his light, and that is why he is our hero.”

The 8-year-old was selected as one of two children across the country to serve as this year’s 2020 National Ambassador of Hydrocephalus Awareness. Jaden will join 3-year-old Kaylie Mae Lingor of Texas in his ambassador role to spread awareness for the illness as well as be featured in a national advertising campaign.

Jaden seems excited to represent; “I am really happy to be a part of something that is for hydrocephalus.”

Jaden and his family will travel from Spring Hill to Washington, DC in August for the organization’s Annual Issues & Action Hydrocephalus Conference.

“We are so grateful that Jaden was picked to be the 2020 Ambassador. It means so much to us to have the opportunity to be involved with the PHF, and to do this with Jaden,” the child’s parents released in a statement.

For more information on the condition, click here.

Source:

3-Year-Old Kaylie Mae Lingor From Texas Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

No matter what this little girl endures she does it with style and is always happy!

8-Year-Old Jaden Stallbories From Tennessee Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Everybody that has met Jaden will tell you all about his sense of humor, and how he is such a sweet little boy. Throughout everything that he has endured, he still smiles and laughs. He has never let anything dim his light, and that is why he is our hero.

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