Will organize new WALK to End Hydrocephalus in Decatur
Lucky McMahon was just one day old when he had his first brain surgery to treat his hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Now, at five years old, Lucky has endured five brain surgeries and 10 other surgeries to treat other related conditions. That’s why his mom Paula McMahon is on a mission to raise awareness of his condition and raise much-needed funds for research by organizing the first WALK to End Hydrocephalus in Decatur, IL.
“Lucky has very severe hydrocephalus. He only had about 4 percent of his brain matter when he was born and the excess fluid in his brain from the hydrocephalus caused other problems as well. He also has Chiari Malformation and cannot walk well without a walker,” Paula explained. “Sadly, not many people know about hydrocephalus and that needs to change.”
For Lucky, his condition has meant multiple hospital stays and weekly physical, occupational, speech, feeding and vision therapy sessions. He also has vision problems, developmental delays and is still learning to walk on his own.
“Just by looking at Lucky you wouldn’t know what he’s been through because he’s always smiling and loves everyone he meets. But his stubbornness is his best trait because nothing deters him. You tell him he can’t do it and he’ll show you he can,” Paula said.
Over 1 million Americans are currently living with hydrocephalus, a complex, condition marked by excess accumulation of cerebrospinal fluid on the brain. However, anyone at any time can develop hydrocephalus from a brain injury, tumor, or infection, and some people over 60 develop Normal Pressure Hydrocephalus, which is often misdiagnosed as Alzheimer’s, dementia or Parkinson’s. Like many hydrocephalus patients, Lucky has a device called a shunt implanted in his brain to drain the excess fluid into another part of the body. Shunts save lives, but frequently malfunction, become infected, or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries throughout their lifetime.
The Hydrocephalus Association hosts over 40 WALKs to End Hydrocephalus around the country each year. The WALKs are 100 percent volunteer-led. This year will be the first time Decatur will get its own WALK. Paula and Lucky first participated in a WALK to End Hydrocephalus two years ago in Indianapolis and were able to learn about important educational resources available and to meet others impacted by this condition.
“Having a local WALK to End Hydrocephalus is so important because it’s an event where people impacted by hydrocephalus can come together, learn from each other and feel united in a common cause,” Paula said. “My goal is to give hydrocephalus the recognition it deserves and to raise as much money as we can so that scientists can find a way to prevent and cure hydrocephalus.”
The Decatur WALK to End Hydrocephalus will take place at Fairview Park in Decatur on Sept. 26, 2020. Paula will organize the WALK along with another local mom, Alysia Matich. The WALK will help raise critical funds for hydrocephalus research, support and education programs.
About the Hydrocephalus Association
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. More than 60 percent of HA’s funding comes from individual donations, and approximately 35 percent comes from foundation and corporate grants. Since 2009, HA has invested nearly $10 million in cutting-edge research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the United States. The Hydrocephalus Association’s mission is to find a cure for hydrocephalus and improve the lives of those impacted by the condition.