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After Jodi and David DeMay, of Mount Airy, had their second daughter, Aubrey, on Oct. 26, 2007, the couple knew something was wrong. More formula came up than stayed down.

"She couldn't swallow. We knew something was wrong but the doctors told us to keep feeding her and she would do better in time," Jodi said.

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At 1 1/2 years old, Aubrey finally began swallowing with ease, but she was having chronic urinary tract infections. David said doctors blamed it on every possible thing, but Jodi was determined to find the cause.

"My wife was very proactive," David said. "She knew something was wrong and she wasn't giving up."

Finally, in 2012, after 20 UTI's, Jodi said the truth began to unfold. During a regular checkup, Aubrey's pediatrician noticed her colon was distended and referred her to a urologist. Video-dynamic x-rays with a contrasting agent revealed that Aubrey's bladder was shaped "like a long balloon," Jodi said.

"The bladder should be heart shaped but hers was long and extended. It wasn't draining the urine and that was causing the UTIs," she said.

Aubrey was sent for an MRI to check for a spinal injury or other anomalies that sometimes accompany a distended bladder. Jodi said the MRI showed Chiari malformation in the neck area, a brain condition that causes the brain to sit improperly on the spinal cord and inhibits the flow of cerebrospinal fluid.

According to Jodi, Chiari malformation can cause difficulty swallowing, choking, vomiting, headaches, fatigue, muscle weakness, dizziness, impaired coordination, neck pain, unsteady gait, poor hand coordination, tingling of the hands and feet, and speech problems.

"The doctors at the time said, 'We can't help her. She needs to see a neurosurgeon,'" Jodi said, but the couple — living in Michigan at the time — said very few neurosurgeons specialize in the condition.

They turned to the Internet, where they learned that Aubrey had almost every symptom a child with Chiari malformation could have. And they found a doctor. They met with Dr. Holly Gilmer in April of 2012.

"That is when we found out that Aubrey also had a tethered spinal cord," Jodi said. "[That is when] the brain descends into the spinal cord."

David said they were stunned at the diagnosis, but they also felt relieved.

"After years and years, at least we knew what was going to happen," he said.

Immediate surgery was recommended. In June of 2012, Aubrey had bone removed from her spine, allowing her spinal cord to untether and fall back to normal range, Jodi said. Then, in September of 2012, she had Chiari decompression surgery on her brain.

Doctors created a larger opening in her skull to allow the pressure to be taken off her brain, cut off the section that had herniated into the spinal cord, and put a synthetic patch where her skull opening was enlarged to hold everything in place.

Aubrey's 9-year-old sister, Meredith, can recall how she felt the day of her sister's surgery.

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"I was in the first grade and I had to go to a daycare center. After her surgery I went to see her," she said. "I was kind of worried."

One problem had been fixed, but the bladder infections continued.

"During her UTIs she would retain urine," Jodi said. "Her bladder would fill and she would urinate but some of the urine would remain in the bladder and breed bacteria and this eventually caused urine to reflux into the kidneys."

Jodi said Aubrey was also having constant constipation.

In August of 2013, a gastrointestinal surgeon placed a port in Aubrey's colon. Doctors inserted a small tube to connect the skin in the lower abdomen to the bowel, using the appendix and making a little valve at its base, she said.

"We have to flush it regularly while she sits on the toilet," Jodi said. "This makes her go. The fluid does the work of the muscles."

Amid Aubrey's health problems, David lost his job as an automotive computer programmer in November of 2014. The family decided to move to Mount Airy where David had grown up.

During the three or four months of unemployment, without family health insurance, they racked up medical bills for Aubrey's prescriptions and ultrasounds. By February of 2015, David had a new job and, with insurance in hand, they began searching for a Chiari specialist.

Jodi said friends in an online Chiari support group recommended New York doctor Shumyle Alam. In August, the family packed up Aubrey and all her medical records to meet with him.

"The first thing he told us after consulting was that she was in bad condition," Jodi said. "She'd had about 30 UTIs by then. Her bladder, now covered in scar tissue, doesn't expand or contract."

In October, Jodi said, a supra public catheter was placed in Aubrey's abdomen. Another video dynamic study found reflux to her kidneys was causing them to fail. After seeing it worsen again while replacing her catheter in January, Alam recommended two more surgeries that he hopes will resolve the UTIs. To date, Aubrey, now 8, has had more than 50 UTIs.

On April 26, Aubrey will have a vesticostomy at New York Presbyterian/Morgan Stanley Children's Hospital. Jodi said this will create an opening to the bladder with a catheter below the belly button to remove urine, keeping it from backing up into the kidneys and allowing it to continuously drain into a diaper.

"They are going to cut my tummy open and they are going to work on my bladder," Aubrey said. "They are going to put something in to help me and they are going to stitch my belly up. It hurts when they stitch me. But, yes, I will feel better."

Jodi said the big surgery will be sometime in early 2017 when Aubrey will have bladder augmentation with a Mitronfanoff procedure, which uses a section of the bowel to create a new duct between the skin surface and the bladder.

"The bladder augmentation will take half her bladder and use part of her bowel tissue to create a larger bladder for her. They will take part of her intestines to make a smaller hole to eliminate through," Jodi said. "This will protect her kidneys. Right now she is not eligible for a kidney transplant because the bladder will just attack and destroy the kidneys."

Meredith said while she is kind of used to her younger sister having medical appointments and surgeries, she is still worried.

"I wish she wouldn't have issues so I could see my parents more and see her a lot. Then my parents wouldn't have to go away," Meredith said. "She's a nice sister and she's really sick. I'm really happy she is alive."

With Meredith, Aubrey and Erica, a third child born four years ago, Jodi and David have their plates full, but they say much of their focus must remain on Aubrey.

The upcoming operations will add to the family's medical debt which is already more than $10,000. Now they are looking at travel and hotel expenses in New York. The Ronald McDonald House where they'd planned to stay is being renovated.

Jodi said despite everything, one blessing has been the support they've seen. This past fall, teachers and staff at Aubrey's school, Parr's Ridge Elementary School, in Mount Airy, collected $320 toward Aubrey's surgeries and treatment.

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In December, the family found out that Aubrey's 7-year-old classmate, Caden Curtin, had written a book and was selling it to help raise funds for Aubrey.

Cindi Curtin, Caden's mom, said her brother, Caden's uncle Doug Gasch, printed 30 hardcover books at his company, Gasch Printing in Odenton.

Caden's cousin, Alison Campbell, illustrated the cover of the book and Jaci Moos, at Gasch Printing, did the inside illustrations.

After they gave some to family members the family had 20 books left. Cindi said she'd just read an article in the Mt. Airy Messenger about Aubrey. They decided to sell the remaining books for $5 each with the proceeds going to help Aubrey.

"Caden and [her twin sister] Kendall made a sign to go in the teacher's lounge. Her goal was to sell them and make $100," Cindi said. "Then, my mom put it on Facebook and it really took off."

When Doug Gasch heard he offered to print 200 more books. Not only did he donate the books, he matched all money earned with a donation from his company. Together, they donated $3,000 to Aubrey's expenses.

The DeMay family said they are overwhelmed by the generosity and, while Aubrey awaits surgery, Caden is working on another book.

Even though the book sale is over, you can help Aubrey by donating to her GoFundMe page at www.gofundme.com/ws8d2bt3.

Lois Szymanski writes for the Neighborhoods section of the Carroll County Times and can be reached via email at loisszymanski@hotmail.com.

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