My Story…
I’ve ran the Gary Bjorklund Half Marathon several times in my life, but this year’s half will be my most meaningful race as I am running with a promise to raise funds and awareness for Hydrocephalus research. As you all know, my son Johnathan was diagnosed with hydrocephalus at seven months old. Navigating life as a new mom was way harder than I ever imagined, and just as I was beginning to gain a little confidence as a mother, I felt pushed right back down with this medical scare.
The day before Johnathan’s scheduled well-child 6-month visit, he developed a fever. Again, as a new mom doing her best, I assumed he might be starting to teethe and told myself I’d have the doctor check on him. Leading up to the appointment, JP started becoming very lethargic, but again, I just assumed his body was working through the fever. While at the check-up, his doctor noticed his fontanelle was bulging and immediately sent us to the ER for scanning. After having CT scans done, the provider at the ER told us with the combination of the fever and the amount of fluid around his brain, he was too afraid to operate and would be sending us by ambulance to Children's Hospital in St. Paul.
After two separate trips and three weeks total at Children’s, Johnathn was diagnosed with hydrocephalus and had brain surgery to have a ventriculoperitoneal (VP) shunt placed in his head to drain the excess cerebrospinal fluid (CSF) from the ventricles in his brain to his abdomen.
It is important to me that others understand the reality of being dependent on a man-made device so that Johnathan can live. A device with the highest failure rate of any other implanted medical device (98% of them fail within 10 years). Johnathan’s shunt gives him life, but it also comes with a lifetime of uncertainty, and that’s why raising funds for hydrocephalus research is so important to my family and me. Your donation goes directly to supporting the Hydrocephalus Association in their work to improve lives of all those living with this conditionand I’m so thankful and honored to everyone that loves and supports Johnathan and to those that can make a contributiontowards this very important research.
Description
Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association (HA) is the nation’s largest and most widely respected organization dedicated to hydrocephalus.
Hydrocephalus can affect anyone, at any age. This life-altering and potentially life-threatening condition occurs when cerebrospinal fluid (CSF) builds up abnormally, putting pressure on the brain. The most common treatment is brain surgery to implant a shunt, a device that helps drain excess fluid. However, shunts are not a cure—they frequently fail, often requiring multiple brain surgeries over a patient’s lifetime, sometimes more than 100.
You can make a difference. I am training for and running the 50th Anniversary Grandma's Marathon to support the Hydrocephalus Association (HA), the leading nonprofit organization dedicated to funding critical research, raising awareness, and providing support for the over 1 million people in the U.S. living with hydrocephalus. Your donation to my fundraiser will not only fuel my journey but also help HA advance its mission to improve lives and find a cure.
Together, we can bring hope to those affected and drive progress toward better treatments and, ultimately, a cure.
Recent donors
| Donation date | Donor name | Donation amount |
|---|---|---|
| Mar 16 | Sally O | $54.10 |
| Mar 16 | Maggie, Sam and Ted | $213.85 |
| Mar 16 | Karen Ball | $54.10 |
| Mar 16 | Love you JP | $160.60 |
| Mar 16 | Anonymous | Undisclosed amount |
| Mar 16 | Glenn Blaszkiewicz | Undisclosed amount |
