Despite more than 90 brain surgeries, she’ll participate in the fourth annual Minneapolis Hydrocephalus Association Walk
Park Center High School senior Olivia Maccoux has given up keeping track of how many brain surgeries she’s had. But she knows it’s more than 90.
It’s not apparent from talking to her, but the 17-year-old Brooklyn Park resident has two tubes, called shunts, that drain fluid away from her brain into her stomach.
Olivia was born prematurely at 29 weeks with a condition called hydrocephalus. It’s a life-threatening condition, because it means there’s an abnormal amount of spinal fluid in and around the brain.
Although the shunts prevent the fluid from building up to dangerous levels, her shunts have failed often. She’s back in the hospital for another brain surgery within weeks of an operation.
“There’s lots of things that can go wrong,” Olivia said.
It’s been about 15 months since the last surgery to treat her hydrocephalus, and that’s the longest she’s ever gone between operations.
“Our family has had to learn to be very flexible,” her mother, Cathy, said. “We just learned to keep going. Don’t get too high, don’t get too low.”
Olivia has certainly kept going. Growing up with two older sisters, she was always active and trying to do what her sisters did. She plays multiple adapted sports — soccer, floor hockey and softball.
“We never let her think that she was sick,” Cathy said.
Although she has some learning impairments because of the brain damage from her condition and repeated surgeries, Olivia carries a normal class load at school and gets As and Bs. In fact, her brain has adapted and rewired itself so different parts process different functions than a normal brain.
Despite her challenges, constant visits to the doctor, daily headaches and missing long stretches of school, Olivia is determined to graduate on time this spring.
“I don’t care how long I’m gone (from school), I’m walking with my class,” she said.
“She’s very determined,” Cathy said. “We’re all very determined.”
Olivia’s determination carries over to her efforts to raise awareness of hydrocephalus and funds for research. That’s why she’s raising money and participating in the fourth annual Minnesota Hydrocephalus Association Walk in Rogers Sunday, Sept. 15.
According to the Hydrocephalus Association, nearly 5,000 babies are born with the condition each year, making it as common as Down syndrome. It can also affect those who have head injuries later in life.
“Most people with traumatic brain injuries probably will end up with a shunt,” Cathy said.
About 70 percent of the 40,000 hydrocephalus operations performed each year are for people who have already had similar operations in the past, according to the Hydrocephalus Association.
The association also says the medical costs of treating the condition nationwide total more than $1 billion annually, but the National Institutes of Health invests only slightly more than $1 million per year in hydrocephalus research. The lack of funding has resulted in no significant improvement in treatments during the past 50 years, the association says, and there has been no progress toward prevention or a cure.
“I think it’s mainly just education” Olivia said. “Most people haven’t ever heard about it, and if they have, they can’t pronounce it.”
Olivia also said many people with hydrocephalus are afraid to talk about it.
Not her. She wants to spread the word.
So far Olivia has raised more than $1,000 this year. She is seeking to raise as much as she can before the walk. She’s also selling “Team Liv” T-shirts for $10 and donating the revenue. T-shirt orders must be received by Thursday, Sept. 5, to guarantee the shirts will be ready before the event.
Anyone can participate in the 2013 Hydrocephalus Association Walk. It’s a 2-mile walk at North Community Park, 13750 Bittersweet Lane in Rogers on Sunday, Sept. 15. Registration begins at 8:30 a.m. with opening ceremonies starting at 9:40 a.m.
Participation is free and open to the public, but any walker who raises at least $50 can receive an official walk T-shirt.
Info and donations: tinyurl.com/teamliv.
Contact Jonathan Young at firstname.lastname@example.org
If you go:
What: 2013 Hydrocephalus Association Walk
When: 8:30 a.m. to noon Sunday, Sept. 15
Where: North Community Park, 13750 Bittersweet Lane, Rogers.
Cost: Free. Participants who raise at least $50 can receive an official T-shirt.