Simon Says, Walk! honors our son Simon's journey with hydrocephalus by raising funds for research, education, and support. Together, we can improve early diagnosis, advance treatment, and bring hope to families facing this condition.
40% of every purchase is donated.
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Last year our son, Simon, was diagnosed with communicating hydrocephalus, a condition where fluid builds up and creates increased pressure on the brain. Simon Says, Walk! is a team dedicated to raising funds for the Iowa WALK to End Hydrocephalus, part of the Hydrocephalus Association’s largest annual fundraising event.
For most of his first year of life Simon’s mom, Janelle, expressed concern regarding Simon’s overall health and development. Despite insistent reassurance that Simon was doing well, and that any developmental delays were within normal variance, Janelle continued to advocate for Simon and eventually received a referral to the University of Iowa Health Care’s pediatric neurosurgery team. On May 21st, 2025, Simon underwent his first MRI to assess his brain’s functioning. The scan showed that Simon had excess cerebrospinal fluid (CSF) in his brain ventricles, causing him tremendous amounts of pain as well as (in part) his developmental delays. Due to the relatively advanced nature of his condition, Simon’s neurosurgeon, Dr. Rebecca Reynolds, recommended taking action as soon as possible.
Simon was scheduled to undergo his first surgery on June 3rd, less than two weeks after his initial diagnosis. Simon was admitted to the hospital four days prior to his surgery, however, after additional scans made his care team want to monitor his health beforehand. Entertaining a 1-year-old in a hospital room was challenging; we passed the time with walks around the hospital floor, visits from Nora and Grandma and Grandpa Knight, and watching lots of Cocomelon. Ultimately, no immediate action was needed and Simon underwent a successful surgery. Over the course of June and July, however, a bulge appeared at the surgery site on top of Simon’s head and he continued to demonstrate signs of severe headaches. After several trips to the emergency room, and in consulting Simon’s neurosurgical team of Dr. Reynolds and Rachel Gage, Simon was scheduled for a second surgery on August 4th to install a ventriculoperitoneal (VP) shunt.
Fast forward a year, and Simon is thriving. He enjoys playing with his trucks, chasing our dog, Howie, and giggling alongside big sister, Nora. He loves eating waffles, going for long walks (to wave to trucks), and the sight of Grandma and Grandpa Knight walking through the garage door. Simon has amassed an incredible care team, who continue to monitor Simon’s health and help him build new skills; to say we appreciate the care they've shown Simon and our family is a huge understatement. Similarly, we have received support from countless family and friends, to whom we are eternally grateful. Seeing Simon laugh, play, and explore the world is something we never take for granted. While his life looks very different today than it did a year ago, hydrocephalus is still part of his story.
Despite Simon’s progress, it is important we recognize that a shunt is not a cure for hydrocephalus; it is a treatment method that is not without its risks, requiring on-going monitoring and, unfortunately, typically necessitates additional brain surgeries to install replacement hardware over one’s lifetime.
This is why we WALK to raise awareness for research and support services. So that, one day, we can live in a world where more medical providers recognize the early signs and symptoms of hydrocephalus and can refer patients for timely care; where parents don’t have to wonder if their child is suffering; where big sisters don’t need to worry whether their family will be home when they wake up in the morning; where shunts are no longer needed; where there is a cure for hydrocephalus. Please consider helping us raise funds to support the Hydrocephalus Association’s efforts by contributing through one of these methods:
How to Support This CausePage:
• Shop + Give: 40% of each purchase will be donated back to the cause.
• Crowdfunding: 100% of cash donations, minus standard credit card processing fees, will be gifted directly to the cause.
