Walk raises awareness, support for hydrocephalus

When Dylan Johnson goes for a walk around Mississippi River Community Park, dozens of people join him – at least they did last Saturday.

Dylan Johnson leads the way, pacing along the Mississippi with Legacy Christian Academy Principal Jake Mulvihill during the Aug. 10 Anoka Hydro River WALK.

Dylan Johnson leads the way, pacing along the Mississippi with Legacy Christian Academy Principal Jake Mulvihill during the Aug. 10 Anoka Hydro River WALK.Photo by Sue Austreng

The 17-year-old lives with hydrocephalus and organized the Aug. 10 Anoka Hydro River WALK to raise awareness and support for ongoing research to help end the disease, an abnormal accumulation of fluid within the cavities of the brain.

Nearly 100 people walked Saturday morning, among them a team of “Grayson’s Angels.”

Grayson, the son of Andrew Olson and Brittany Moe, died in utero May 28, 2013 – one day after an ultrasound revealed that Grayson had hydrocephalus.

“When we heard about this walk, we just had to come out and do anything we could to help find a way to end hydrocephalus,” said Moe, a resident of Cottage Grove.

When Moe and Olson told friends and family about the Anoka Hydro River WALK, soon 42 people formed a team called Grayson’s Angels and came out to walk along with them.

Johnson, the organizer, was just six weeks old when he was diagnosed with hydrocephalus. Since that time, he has lived with a shunt and the six-foot long plastic tube that runs down the inside of his body from his head to his stomach, draining the accumulating fluid.

The shunt and drainage tube is currently the only known treatment for hydrocephalus.

Due to his hydrocephalus, Johnson has had some challenges in school and in sports, but wanted others with hydrocephalus to know that life goes on.

“The challenges I have overcome have made me stronger, and I want to share that message with others,” he said. “I want people to know what hydrocephalus is, how you can live with it and how to help find better treatment and find a cure.”

And so, Johnson organized the first-ever Anoka Hydro River WALK to raise money and awareness about the condition.

The walk included raffle prizes, temporary tattoos and face painting, and a visit from local police and fire personnel.

John Boss of Boss Entertainment Mobile DJ, provided music for the event, donating his time and equipment for the cause.

“I was just happy to come out and do what I could to help make this happen,” Boss said.

Local businesses and community members donated raffle prizes, food and water.

All told, more than $6,300 was raised during the inaugural event.

Donations will be accepted up to six weeks after the Aug. 10 event. Just Google “Anoka Hydro River WALK” for more information about how to make a donation.

To learn more about hydrocephalus, visit www.hydroassoc.org.

Sue Austreng is at
sue.austreng@ecm-inc.com

 
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