23 August 2009

Area child battling cerebral palsy

MARTINSBURG - Two years ago, the Kee family had never heard of a little town in Mexico called Nuevo Progresso, so obviously they didn't know what a great role it would play in their lives.

Brodie Kee, 20 months old, made his trip to Nuevo Progresso when he was only 14 months old. This wasn't a vacation to see the sights of Mexico, but a visit to a clinic called the International Stem Cell Institute.

"I had the perfect pregnancy. Nothing was wrong," said 20-year-old Kayla Kee, Brodie's mother. But two weeks before her due date, she became very ill and started having severe contractions. She noticed Brodie hadn't been moving as much as usual. The pain was so severe she decided to go to the emergency room, and after a through examination, her doctors at Ruby Memorial Hospital in Morgantown decided she needed an emergency Caesarean section because the baby's heart rate was extremely slow.

When he was born, Brodie wasn't breathing. Brodie's father, 22-year-old Adam Kee, said it took eight minutes to revive him. The doctor's recommended Brodie be immediately flown to Georgetown University Hospital in Washington, D.C., for a treatment called "total body cooling."

According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, body cooling is a procedure used to protect against brain injury in full-term infants born with birth asphyxia. The hope of body cooling is that it will increase the infant's chances for survival and possibly decrease the severity of neurological disability.

"The nurse at Georgetown told us Brodie had about a 10 percent chance of survival," said Rick Kee, Brodie's grandfather. They honestly didn't think he was going to make it.

For three days, Brodie was intubated and kept on a cooling blanket.

"He didn't move. He didn't cry. He didn't do anything," said Diane Kee, Brodie's grandmother.

After two weeks at Georgetown, Brodie was flown back to Ruby Memorial Hospital so he could be closer to home, where his parents are students at West Virginia University.

When Brodie returned to Ruby Memorial Hospital, Adam Kee said the medical staff painted a very grim picture for them.

"They gave him a 40 percent chance of living," he said. They were told that even if Brodie did survive, he may be blind and/or deaf, or never walk, talk or eat on his own."

To this day the Kees have no idea what happened to their baby - what made him so sick. They do know that whatever caused his asphyxia at birth now has caused him to have cerebral palsy.

The National Institute of Neurological Disorders and Stroke defines cerebral palsy as being "any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don't worsen over time. ... It is caused by abnormalities in parts of the brain that control muscle movements. The most common (signs) are a lack of muscle coordination when performing voluntary movements; ... stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a 'scissored' gait and muscle tone that is either too stiff or too floppy."

Brodie has the spasticity form of cerebral palsy, and before his trip to Mexico, he was very stiff and rigid.

What happened in Mexico? A miracle some might say.

Diane and Rick Kee are both nurses in the Martinsburg area, and during a seminar they attended in Morgantown for continuing education, they were introduced to stem cell research and what is being done to help diabetic patients.

Wondering what stem cell treatment might do for Brodie, the Kees started researching stem cell therapy and cerebral palsy.

"When we got home, we started searching on the Internet," Diane Kee said. "We saw they were doing stem cell treatment at Duke University and in Georgia, but you had to have the baby's cord blood and we didn't."

Kayla and Adam Kee said they had heard about saving their baby's cord blood after birth, but like most young parents, they didn't have the $2,000 needed to pay for it and actually never thought they would need it.

One day, feeling like they had exhausted all of their options, Diane Kee said she came across the Web site for the International Stem Cell Institute located in Nuevo Progresso, Mexico.

"A whole new world opened up to us," she said.

She read what the Web site had to say, then after speaking with the parent of a child in Florida who had the procedure, the Kees felt it was worth a try for Brodie.

"I was very skeptical," said Kayla Kee. "I thought, 'Oh my gosh - am I really about to do this?'"

Being very apprehensive, the Kees took a leap of faith and left for Nuevo Progresso with $10,000 to pay for Brodie's placental stem cell therapy treatment.

Nuevo Progress is located just across the southern tip of Texas in Mexico. The Kees actually stayed at a hotel in McAllen, Texas.

The Kees admit it was a little scary. There they were, going into a foreign country that has a violent reputation, while carrying a cashier's check.

They found that the International Stem Cell Institute is a very small operation made up of one doctor, a nurse and an office manager. Again, not very reassuring.

But once they met Rita Alexander, the office manager, and Dr. Gonzalez, they knew Brodie was in good hands.

"He was very sweet. Before the procedure, he made sure we didn't have any other questions," said Kayla. "You could see in his eyes that he really cared."

Although some of the equipment looked a little dated, the Kees said the office was very clean and the staff was very friendly.

Adam said Alexander told them that the worst that could happen was that nothing would happen, but the best that could happen was that they would see some sort of improvement in Brodie - and they have.

The entire procedure took only about a half-hour to complete. Brodie had four 1/4-inch incisions made - one in each arm and leg and one in his stomach. In the incision, Gonzalez placed placental and umbilical cord tissue containing stem cells. He then closed the incisions and the procedure was over. He used a local anesthetic for each incision and Brodie was awake the entire time, smiling and happy, his parents said.

Before the treatment, Brodie was not able to lie on his stomach. Adam Kee said his muscles would become very tense and he would arch his back, bowed up like a banana.

"I could tell he was in pain," said Kayla Kee. But ever since the treatment, Brodie has not had one episode of back arching and can even lie on his stomach now.

The Kees said they started noticing improvements in about two weeks.

"It was almost overnight," Adam Kee said.

Brodie had the procedure done last St. Patrick's Day, and his parents said he is a completely different child now.

Before Brodie had the stem cells placed into his stomach, he used to projectile vomit and couldn't keep any food down.

But now, his mother said he's eating well and has put on weight.

The Kees said they want to emphasize that the stem cells used for Brodie's treatment came from placental and umbilical cord tissue, not embryonic stem cells.

Diane Kee said the tissue used in the procedure goes through extensive testing, and because it does not have a blood type, stem cell treatment is not like an organ transplant - it is universal.

The Kees said that stem cell treatment is something that can be multiple times, depending on the illness being treated. For example, if someone has a degenerative disease, like rheumatoid arthritis, the patient must go back for follow-up treatments in order to maintain a certain level of health. If the disease is non-degenerative, like cerebral palsy, the patient can keep going back for treatment and hopefully continue getting positive results until the patient has reached full potential.

The Kees plan on returning to either Mexico or possibly Germany to continue Brodie's treatment.

Unfortunately the stem cell treatment and the trips involved are very expensive, and for two college students, it's more than just a financial stretch. That is why the Kees are planning several fundraising events in the future.

On Oct. 23, the Civitan Club is hosting a basket bingo at the Moose Lodge in Martinsburg. Diane Kee said she has a lot of Longaberger baskets she is donating to the cause.

Adam Kee said he went to high school with Nate Sowers, quarterback for the West Virginia Mountaineers, and he has given him three footballs to be signed by Noel Devine and other players on the team, that he will then raffle off.

The Kees hope the community fundraising efforts will help them pay for Brodie's treatment and travel costs.

When it comes to stem cell research, "new things are happening every day," said Diane Kee.

Even though patients might have to go out of the country at this point to seek treatment, the Kees want the community to know there are options out there for people struggling with a variety of diseases.

"I don't want people to hesitate because they're scared," said Kayla Kee.

As Diane Kee said, "We took a leap of faith," and it has certainly paid off.

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