Moore first grader battles mystery illness
By M. Scott Carter
American Staff Writer
Back in September of 2007, Sydney Medley was a typical 6-year-old girl.
She was, her mother says, "a happy little girl" who liked dancing and gymnastics. She'd just started first grade.
Then everything changed.
What her mom thought was a stomach virus evolved into a seven-month nightmare which sent Sydney to two different hospitals and a rehab center.
And even today, her doctors can't tell you what made her ill.
"It's been a living hell," Sydney's mother, Kerri, said. "She's had ever medical test imaginable and they never really could find anything wrong with her."
Sydney's doctors still don't know.
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Kerri Medley probably won't forget October 7, 2007.
That day, her daughter was sick; Kerri thought she had some type of stomach virus.
"She was sick and it wasn't going away," she said. "She was running a real high temperature so I took her to the Moore Hospital."
There, doctors treated the youngster and that Friday, her mother said, "she felt a lot better."
The improvement didn't last.
On Saturday, Sydney woke up sick and this time, she didn't get better.
"She work up Saturday with another high fever again, and was very thirsty," Kerri Medley said. "By Monday she was vomiting and she kept getting worse."
Kerri and her daughter returned to the hospital.
"I took her back to emergency room," she said. "The doctors tested her, then she threw up on them."
It was at that point that Kerri grew very concerned.
Sydney continued vomiting and began vomiting blood. Doctors performed a CAT scan and readmitted the child to the hospital.
"Her fever was really high," Kerri said. "It got so high that they put her on ice packs."
That fever, coupled with CAT scan results "showed either a bowel obstruction or an inflamed appendix" and sent the young girl to OU Children's Hospital in Oklahoma City.
"They transferred us to OU Children's where they did an appendectomy," Sydney's mother said. "But she went downhill from there."
Sydney wouldn't see her home again for six months.
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At OU Children's, the medical staff is world renowned. Children from across the country are flown to the facility for surgery. Experts across the nation praise the hospital as one of the best.
But Sydney's case was different. Despite every test, despite an ever-expanding staff of experts, Sydney continued to get worse.
"She would turn blue and couldn't breathe," Kerri said. "So they put her on a respirator." On Oct. 9, Sydney was moved to the hospital's Intensive Care Unit -- she would remain there until Dec. 20.
"They ran tests and tests and more tests," Kerri said. "They tested her for everything; they did spinal taps, x-rays, CAT scans and MRIs."
At one point, doctors felt Sydney might have Lupus and sent for an expert.
Those results, like so many others, were negative.
"They just didn't know," Kerri said. "It's bizarre. She was a normal child when she went into the hospital."
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Time passed slowly.
Early autumn faded into late fall. Halloween gave way to Thanksgiving and still, Sydney, her family, and her doctors were no closer to discovering the cause of her illness.
"They tried numerous times to diagnose what she has," Kerri said. "They think it's some form of acute autonomic neuropathy, but they're not sure."
Kerri said Sydney was even tested for Hemophagocytic lymphohistiocytosis -- a disease where the body's blood cells attack each other.
"They're just not sure," she said. "They still don't know."
Failure after failure began to take its toll on Sydney's family and her physicians. "At one point the ICU doctors told us, 'we may never know what's wrong with her,'" Kerri said.
But like her mother and her grandmother, Sydney proved to be a tough patient.
"We almost lost her twice," Kerri said. "But she came through it. She is amazing."
Sydney's unknown disease proved tough, too.
"After a while she told me she couldn't feel her toes," her mother said "Later, she said she couldn't feel anything at all."
She still can't.
Sydney was paralyzed from the neck down.
And she continued to get worse.
"She couldn't eat anything through her mouth because of all the tubes and stuff down her throat," her mother said. "And, once, when she tried eating, she aspirated into her lungs and got pneumonia."
By late December, the six-year-old who liked to dance and play was paralyzed and weighed only 39 pounds.
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Great moms -- and there are millions of them -- will do just about anything for their kids.
Great moms run errands, organize the carpools, bake thousands of cookies for class parties, and serve as vice president of the PTA.
Great moms help with homework, bandage wounds, and heal broken hearts -- all while cooking dinner and paying bills.
Great moms never leave a sick child's side.
Relatives and other family members may come and go; dads have to work, but great moms are there at the hospital 24-7-365.
A great mom speaks medical lingo with the best of the doctors; a great mom is an amateur pharmacist; a great mom keeps an ongoing record in her head of her child's medicine, next doctor's appointment and diagnosis.
Kerri Medley qualifies as a great mom.
She's dealt with the fear.
She's beyond the exhaustion.
She understands the pain.
But day-after-day, Kerri is there making sure she leaves nothing undone as she struggles to help her small, frail child recover.
"Every day is a new day," she said. "I just want to enjoy everything I possible can with her and my other daughter; but boy, do I feel old."
At 35, she might not be old, but for Kerri the ongoing battle for Sydney's health is a draining experience -- emotionally, physically and spiritually.
"It's like when I take her out now," she said. "We have to take all this equipment with us and I watch how the other people stare. It's sad, and it's just really frustrating."
But though Kerri Medley may be tired, she hasn't given up.
"I'm still in mom mode," she said. 'I'm trying to do everything I can to make her better."
Kerri's efforts may be paying off.
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Slowly -- ever so slowly -- Sydney has began to improve.
And on Jan. 7, she was discharged from OU Children's and transferred to the Children's Center in Bethany for rehabilitative services.
"When we went to the center, Sydney could barely move her right hand," Kerri said. "Since then, she's made tremendous improvements. She's starting to use her hands and she's starting to walk again."
She is, her mother said, "beginning to reclaim her life."
But Sydney's medical problems continue.
She still cannot eat and still requires breathing treatments, catherization and full-time medical care.
"She still has to have machines all over," her mother said. "Her bedroom looks like a hospital."
Sydney also missed her entire first great year.
"Now, since she's improving, we're trying to get her into summer school," Kerri said. "We want to get ready for second grade. She's well enough to go to school, it's just that there are challenges with that."
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On May 8 -- just days before Mother's Day -- Sydney came home.
After seven months of hospital stays, operations, tests and therapy Sydney, now 7, returned to her home in Moore.
"I just try and be thankful," her mother said. "She's alive and I still have her. God didn't take her and I'm grateful."
And it's that lesson, Kerri said, that is, perhaps, the most meaningful.
"Sydney has always been very spiritual. Even as a child."
A point driven home during Sydney's stay in ICU.
"We were talking and Sydney told me she had seen PaPa," (Kerri's father, who had died several months before), Kerri said. "She told me PaPa told her it 'wasn't time for her to go. She was supposed to stay here.'"
And the anguish in her mother's voice fades to hope and concern.
"She's feeling much better now," Kerri said. "She's much better than she was six months ago. But what scares me the most is we don't know what it is and if it could happen again."
While that fear remains in the back of Kerri Medley's mind, the simple joy of seeing her daughter get better keeps her darker thoughts at bay.
"I just have to keep telling myself she's getting better and she'll be able to do all that stuff again," she said. "It's just gonna take a long time."
Thankfully, it's time both Sydney and her mother now have.
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When you're 7 missing a birthday is one thing. But when you 7 and you miss your birthday, Halloween, Thanksgiving and Christmas, well that's just wrong.
And Sydney Medley has several holidays -- and that lost birthday party -- to make up.
"She turned 7 in the hospital," Kerri said. "It made me sad she was in the hospital on her birthday."
This Sunday, Sydney gets one of those parties back.
Beginning at 1 p.m. at Moore's Buck Thomas Park, Sydney's parents, family and friends will welcome her home with a surprise party.
And the public is invited to attend.
"We wanted to welcome Sydney back home and, at the same time, say 'thank you' to all those who raised money, prayed and helped us," Kerri said. "We're so grateful, we just wanted people to know that."
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Sydney Medley still has "a long way to go" in her recovery. But the fact that she's home, she's beginning to walk again, and that her tiny body is beginning to heal is welcomed news for Sydney and her family.
The challenges -- and doctor's appointments -- remain, but for this little girl, taking things one day at a time is now part of the routine.
"I just pray that she will continue to get better," her mother said. "But she's strong. She gets that from her grandmother and she gets that from me. But she is one very strong little girl."
A little girl who simply wants to dance, play and finish first grade.
Moore first grader battles mystery illness
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