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Twenty-two-month-old Carter Maskrey was diagnosed with Chiari malformation, a neurological disorder, last December.

Continuing life with Chiari

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Continuing life with Chiari
Red Wing Minnesota 2760 North Service Drive / P.O. Box 15 55066

Carter Maskrey has faced a lifetime of medical problems and he's just barely a toddler.

The 22-month-old son of Red Wing residents Dusty and Heather Maskrey was constantly getting sick with croup, an intense cough, after he was born.

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"He was our first child, so we didn't know that this isn't normal," Heather said.

Carter's coughing progressed to gagging and choking, further concerning his parents. What's more, the baby wasn't able to consume a majority of food they tried to feed him.

"He was 10 months old and couldn't even eat a pea without choking," Heather said.

Hospital visits became frequent for Carter, but many doctors still couldn't figure out what ailed him. Some thought he was suffering from acid reflux or chronic laryngomalacia while others pegged the problem as a floppy epiglottis, for which the baby underwent surgery.

When nothing worked and Carter's regular choking continued, the Maskreys took him to Mayo Clinic in Rochester to see a pulmonologist in hopes of solving the problem. While it was discovered that Carter's lungs were not the source of the problem, it was the lung doctor who was finally able to tell Dusty and Heather what was wrong.

Carter suffers from Chiari malformation, a neurological disorder that often causes symptoms like severe headaches, sleep apnea, respiratory problems and weakness or pain in the arms and legs -- all of which Carter had. The official diagnosis came on Dec. 22, 2011.

Having Chiari malformation meant that Carter's cerebellum, or bottom part of his brain, was descending out of his skull and crowding his spinal cord, putting pressure on both his brain and spine.

With no cure known, the only option available was to have Carter go through brain surgery and hope it would eliminate the painful symptoms of the disease.

"The doctors said sometimes it doesn't help at all, sometimes it's 100 percent fixed and sometimes it's half fixed," Heather remembered.

Although they didn't know which outcome they would see, Dusty and Heather figured they had nothing to lose.

"We were like, his quality of life is not very good so let's just do it," Heather said.

After that decision, Feb. 15, 2012, became a date that the family would never forget. Dusty and Heather sat in Carter's hospital room and would receive calls every so often as things progressed in the operation.

Not long after Carter's surgery began, a "code blue" was announced over the hospital system. The code is used when a patient requires resuscitation.

"I remember thinking, 'Oh, my God, I feel bad for whatever family that is,'" Heather said.

Neither of the parents thought the code involved their son. But as time went on and they weren't given more updates on his condition, their thoughts quickly changed.

"It took doctors 45 minutes longer than we thought, so we kind of had a feeling," Dusty said.

Thankfully, the scare only happened once: Doctors revived Carter and the rest of the surgery was successful.

Since recovering, Carter no longer chokes or gags, he can breathe much more easily and he doesn't have trouble eating like he used to. Although his development will be slower than most other children, he's expected to live a fairly normal life.

Now that the Maskreys have started living without constant worries and concerns, they've decided to raise awareness about the disease. Heather hopes Chiari will become more well-known, thus making it easier for doctors to diagnose it in the early stages. She plans to holds several events that will not only increase awareness, but also raise funds for research.

"The more research they can do, the more we can find out. I think that'll help us the most," Heather said. "I don't want to see other parents go through what we went through."

Raising funds for research

Anyone interested in helping to fund research efforts of Chiari malformation can send monetary donations to the Red Wing Credit Union, Attn: Carter Maskrey Benefit Account, 3303 North Service Drive, Red Wing, MN 55066. Checks should be made payable to the Carter Maskrey Benefit Account.

All donations will be given to Conquer Chiari to help with research.

Additionally, a fundraiser golf tournament is scheduled for July 27 at Mount Frontenac Golf Course. To register as a corporate sponsor or sign up to play, contact Heather Maskrey at 651-380-7797 or heathermaskrey@gmail.com.

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