One step at a time for Anoka teenager

A six-foot long plastic tube runs down the inside of Dylan Johnson’s body. From the 17-year-old boy’s head to his stomach, the tube drains excessive fluid pooling in the cavities of his brain. The build-up of fluid is caused by hydrocephalus and Johnson has lived with the disease since he was just six weeks old.

Dylan Johnson, a student at Legacy Christian Academy, planned and organized the Anoka Hydro River WALK to raise money, awareness and hope for hydrocephalus. Johnson was born with the disease, a medical condition in which there is an abnormal accumulation of fluid in the cavities of the brain. Photo by Sue Austreng

Dylan Johnson, a student at Legacy Christian Academy, planned and organized the Anoka Hydro River WALK to raise money, awareness and hope for hydrocephalus. Johnson was born with the disease, a medical condition in which there is an abnormal accumulation of fluid in the cavities of the brain. Photo by Sue Austreng

“I have had challenges in school and sports because of my hydrocephalus,” Johnson said. “But the challenges I have overcome have made me stronger, and I want to share that message with other teens, especially those dealing with something difficult in their lives.”

And so, Johnson, a student at Legacy Christian Academy, has planned and organized the Anoka Hydro River WALK, a one-mile walk to raise awareness and support for funding research to help end hydrocephalus.

The event takes place 9 a.m. Aug. 10 at Mississippi River Community Park, 2751 Cutters Grove Ave., Anoka.

It is one of more than 30 Hydrocephalus Association fund-raising events held in 28 states across the country each year.

Money raised at the Anoka Hydro River WALK will support the association’s national goal to raise more than $750,000 this year for critical hydrocephalus research and education.

An opening ceremony for the Aug. 10 event is scheduled for 8:45 a.m. and the walk begins immediately after.

Also that morning, members of local police and fire departments will stop by, face painting and washable tattoos will be offered, food will be provided and a raffle will be held.

Raffle items include tickets for Minnesota Twins baseball, Lynx basketball and Swarm lacrosse games, jewelry, gift baskets and more.

“Our goal is to have 100 walkers and raise $5,000,” said Johnson.

Walkers raising $50 or more get a free Hydrocephalus Association T-shirt; $250-$499 raised earns a sweatshirt; larger amounts put the walker in the running for more prizes.

“It’s free to walk, but remember this is a fund-raiser,” Johnson said, encouraging donations.

According to Johnson, donations will be accepted up to six weeks after the Aug. 10 event.

To register or to donate to the Anoka Hydro River WALK visit www.walk4hydro.kintera.org/riverwalk.

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

Facts about hydrocephalus

The following are a few interesting facts about hydrocephalus, provided by the Hydrocephalus Association.

• Anyone at any age can develop hydrocephalus.

• On average, 6,000 babies are born with hydrocephalus in the United States each year.

• Head injuries suffered by U.S. military personnel serving in Iraq and Afghanistan are greatly increasing the number of Americans living with hydrocephalus.

• More than one million people in the United States currently live with hydrocephalus.

• There is no prevention. There is no cure. The most common surgical treatment is the implantation of a shunt to drain fluid from the brain.

• More than 36,000 shunt surgeries are performed each year.

• There have been no significant improvements in hydrocephalus treatment since the 1950s.

• Medical costs for children with hydrocephalus total more than $2 billion annually.

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

  • Glynda Warren

    My son also has Hydrocephalus. Diagnosed in 2010 age 10 months. It has been a roller coaster. It is great to see how well those with this defect can live a relatively normal life and how he is helping raise awareness. I hope my son can be as inspiring as he grows up. I want to say a big thank you and well done to this young man.

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