The Brainy Day Trail Run is a race with a cause. With every running stride, we are helping make a difference for children in our own community. We will be donating a portion of every race entry to the Pediatric Hydrocephalus Foundation of Michigan.
The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this brain condition. The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.
100% of donations to the PHF of Michigan goes to research and support for a cure and additional treatment options for those with Hydrocephalus.
We run to help people battling with this condition. We run for children like Willow. Here is her story:
Willow was born 10 days early with no health issues that we were aware of. She was our fourth child and when we saw this extreme tilt of her head to one side, we knew something wasn’t right. She was about two months old when we questioned the doctor about this head tilt.
Her pediatrician sent her for a head ultrasound to “rule out any of the crazy” she told us. It would be only hours later that our world was flipped upside down. Our pediatrician called us after office hours to tell us that Willow had something called hydrocephalus, or water on the brain. She would need an MRI to see the extent of what this meant, but we knew one thing for certain from that first moment — we would not allow this to define who Willow was.
Shortly after that call she had her MRI done, and two weeks later we got her diagnosis (so around three months of age). Over the phone, we were told she had hydrocephalus ex vacuo. A fancy term for the fluid is in her skull to keep it from caving in because her brain never fully developed. Now, fast forward another month, and she’s at her four-month-old check up. During the head measurement, the pediatrician verified that a few times and said this doesn’t seem like the right diagnosis. She sent us to the children’s hospital and after a few other tests and many hours, Willow had her first shunt placed.
I wish that was the end of her shunt surgery story, but it was only the beginning. She would go on to have a total of 12 brain surgeries, all related to her shunt, due to malfunctions, replacements, finding out she is allergic to the shunt itself, all by the time she was 16 months old. She would go on to also receive physical therapy to learn to sit, crawl and walk. She received speech therapy to learn to speak, and would continue with that until she was 5 years old. She began wearing glasses for treatment of a lazy eye at 18 months old. She also had occupational therapy to help with her fine motor skills as she grew.
She is now 11 years old, and has had 18 surgeries, all brain surgeries, to replace the shunt. She still sees a physical therapist as well to help fine tune some weak ankles, muscles we have noticed as she is growing.
Her diagnosis definitely doesn’t define her though. In kindergarten she became a published author (book for sale on Amazon), she sold her first piece of art in second grade. She is a young lady who loves baking, unicorns, space, art, helping others, scouts and so much more. If you are wondering what happened to her brain… the first neurosurgeon was wrong. Her brain had indeed fully developed – it was just squished against her skull due to all the fluid. She is indeed our miracle child.
There are so many out there like her. Hydrocephalus affects 1 in 500 births, and can be acquired at any time in life due to a brain injury, or some other trauma. Some people have other conditions alongside their hydrocephalus, and some, like Willow, only have hydrocephalus. We appreciate all the help to fund research so that we can find better treatments than repeated brain surgeries.