FRIDLEY, Minn. – (September 6, 2013) – Chiari Malformation is a disorder of the brain that results in the compression of parts of the brain and spinal cord, impacting all kinds of daily activities.
“It’s a neurological disorder where your brainstem starts to go back down into your spinal area.” says Natividad Seefeld, who’s been fighting for Chiari awareness and research since her younger sister was diagnosed with the disorder in 2007.
“She’s been a chronic headache holder. Most of the time you’re diagnosed as being migraines, anxiety, depression; so you’re misdiagnosed,” said Seefeld. “I had my brain scanned in February of 2007 for something totally different, so she thought ‘maybe I’ll go in and do it,’ and that’s how they found it.”
Carter Maskrey is two and half years old. His parents knew something was wrong when he was born, but it took nearly a year, multiple surgeries, and countless doctors visits for them to receive a diagnosis.
Carter had breathing problems, he had difficulty swallowing, and he was very frequently sick. Doctors tried many different courses of treatment, but could not find anything that helped relieve his symptoms. That’s when the Maskrey’s began seeing a doctor at the Mayo Clinic. It was there that a doctor first mentioned Chiari Malformation. They had an MRI done which confirmed that the problems were stemming from Carter’s brain.
“We saw the neurosurgeon,” said Maskrey, “He said [Carter] needed to have brain surgery to take some of the symptoms away. There was a 50/50 chance that it would take any symptoms away. They don’t know if it’s going to work. They don’t why it works sometimes and sometimes it doesn’t. They just knew Carter’s was very restricted and they had to do something.”
Even with those odds, Carter had the surgery, but he nearly died in the process when he started bleeding very heavily in the operating room. However, after hours of surgery, doctors said the surgery was successful, and that Carter was going to recover.
Although Carter doesn’t experience the severity of symptoms he had before the surgery, he still experiences a lot of pain. Heather says that some days he seems like a perfectly happy and healthy boy, while other days, he is riddled with pain.
“We can have days where he seems to just be in pain. His legs will give out. He’ll be hitting his legs. He’ll be holding the back of his head,” Maskrey says. “There’s nothing I can do. As far as adults who have [Chiari], they have said that nothing works for pain, you just have to kind of go through it. And that’s the hardest thing to see your two-year-old child going through all the pain and there’s nothing you can do about it.”
Seefeld says that she sometimes also feels helpless as she watches her sister’s fight. “It hurts my heart a lot to see her in so much pain everyday.”
While the entire process was difficult for Heather and her family, she says that one of the hardest parts for her was not being able to find other people who knew what she was going through, and not being able to find people who understood their daily struggles.
“I think the hardest part was just not having any support.”
Until she met Natividad. Last summer Natividad had just taken on the role of being the organizer for the Minnesota branch of the Conquer Chiari Walk Across America. She took on the role at the request of her sister, and saw how healing it was for people to be able to connect with others in similar circumstances.
“Give people the chance to connect with each other to let them know that they’re not alone- especially with people that have children,” Seefeld says.
“That day of the walk- it was amazing. I did not know that there were so many people with Chiari,” says Maskrey. “We could see and have that support that we never knew was there. And that has been the best thing that we could have.”
This year’s Conquer Chiari Walk Across America will be held on September 21, beginning at 8:30AM at Commons Park in Fridley. They hope to raise local awareness of the disorder and funds to support the research being supported by Conquer Chiari.
Related Links:
Conquer Chiari Walk Across America
Donate to the Walkers
Learn More About Chiari
Support Groups:
Minnesota’s Chiari Group
Conquer Pediatric Chiari
Minnesota Chiari Warriors
