Trip of a Lifetime

Dani Smith sits in her playroom next to the walker she needs to use to stand and move around her home. She will be leaving next week for China to undergo a procedure the family hopes will allow her to stand and walk without the device. (Herald Photo by Heidi Terry-Litchfield)

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Three-year-old Danielle Smith will be going to the other side of the planet with her mom, Cindy, on March 16.

It is not a great vacation opportunity for Dani, however.

Instead, she will undergo a medical treatment her parents hope will allow her to stand and walk without assistance for the first time in her short life.

Dani was born with Myelomeningocele, a birth defect in which the backbone and spinal canal do not close before birth. The condition is a type of spina bifida.

After birth, surgery to repair the defect is usually recommended at an early age.

In Dani’s case, she was left partially paralyzed; she still can’t stand or walk unassisted.

“The doctor’s said she would end up in a wheelchair by now,” Cindy said.

“We are going to China for treatment that we hope will help her to stand and walk, as well as improve her bowel and bladder.”

Once they land after their 24-hour flight, they will go to Qing Dao, where Dani will receive donated umbilical cord stem cells.

“We have her own cord blood stored here, which we would like to use, but the treatment isn’t available in the United States at this time,” Cindy said. “And we are unable to take her blood with us to China.”

The donated stem cells will be administered to Dani through a 20-minute IV once a week for five weeks.

“The idea is the stem cells go to where they are needed,” Cindy said. “We hope they will go to her bowel and bladder and to her spinal cord to help repair the nerves.”

It is important that Dani be well when she gets the treatment, or the stem cells will go to help her recover from the illness instead of the nerves that need repairing.

With success, Duke University has been doing a study using this procedure to help children with cerebral palsy.

“We contacted Duke University, but they can only do it within the cerebral palsy parameters,” she said. “We’ve talked to other researchers, but no one in the United States is close to opening research for spina bifida.”

If researchers in the United States agreed to research using umbilical stem cells on children with spina bifida, it would still be five years away before they could start doing trials, making Dani older than the recommended age for the procedure.

“It’s more effective in children under 5,” Cindy said. “They are working on finding a way to expand stem cells so they can be used for larger people, and they’ve had some success recently.”

Cindy came up with the idea after searching the Internet and reading forum posts by others with spina bifida and spinal injuries.

She found a woman from Canada who had taken her son to China for treatment and Cindy was convinced it was worth looking into further.

“The woman gave me the contact number for a woman from Plainfield who went to China for the treatment for a spinal cord injury and she was a nurse,” Cindy said. “After talking to her and knowing she was a nurse, I felt confident in our decision.”

If Dani didn’t go to China, her doctor would have to put a catheter in so she could urinate, as many children with Myelomeningocele experience.

“The doctor said we’d have to get the catheter soon,” she said. “We are going to wait to see if this works before we do that.”

China is currently the only country offering the procedure using umbilical stem cells for spina bifida.

“China is far more advanced with stem cell research than we are,” Cindy said. “The doctors in China say the procedure is safe, with just a few patients getting a fever or rash.”

The initial treatment will cost the family $36,000, not including the airfare.

The money was raised locally by various fundraisers and with a collection at Dr. Mark Kaschube’s annual magic show held in October in Channahon.

Even if the procedure works, there won’t be an instant recovery; she won’t come home walking.

Once she gets home, they will start intensive therapy, working toward a goal of standing and taking a few steps within the year.

“I hope she can stand for the next magic show, so she can walk on the stage,” Cindy said.

Dani is prepared for her trip, already greeting people with “nín hǎo” – “hello” in Chinese.

The family will leave for China on March 16 for a five-week stay before returning for therapy.