A long trip, a lot of hope: West Fargo boy to get treatment in Germany
Ethan Radtke's Christmas list brought his mother to tears.
The 5-year-old twin, whose twisted lower limbs force him to use a walker to move around the house, asked for only two gifts: a Thomas the Tank Engine toy train and a new set of legs that work.
"I'm like, gulp, how do you deliver that one?" said his mother, Lisa Radtke.
She hopes the answer is waiting in Germany.
In July, the West Fargo family will fly to Dusseldorf, where Ethan will undergo a stem cell treatment not available in the United States.
It's an expensive procedure, and one that's not guaranteed to work.
But Radtke and her husband, James, see it as their red-headed son's best chance at better mobility.
"We said, 'If we don't do this, we're always going to say, what if? What if it works?' " she said.
Ethan and his twin sister, Ashlee, were born seven weeks premature at 4 and 3 pounds, respectively.
Ethan had under-developed lungs, and his mother had extremely high blood pressure at the time.
The lack of oxygen to Ethan is believed to have contributed to the neurological damage that caused his cerebral palsy, she said.
Cerebral palsy affects two to three of every 1,000 children born in the United States, according to the Centers for Disease Control and Prevention.
Ethan's version of the disorder is called spastic diplegia, formerly known as Little's disease for the English surgeon William Little, who first described how it causes stiff, spastic muscles in the legs.
Ethan used to walk with crutches, but now his muscles have tightened to the point that he must use a walker or crawl.
The preschooler at West Fargo's Lodoen Center is "very aware" of his disability and frustrated he can't do everything other kids can do, his mother said.
But Ethan is determined not to let it limit him.
He's adamant about not using a wheelchair, she said. On Wednesday, he crossed the living room with his walker and tossed a tennis ball to his occupational therapist, Tressica Hasbargen. He used his fingers to dig treasure out of a wad of green putty, an exercise designed to strengthen his left hand, which tends to clench up.
"He's such a hard worker, the most goal-oriented kid I've ever worked with," Hasbargen said.
Finding a new option
Specialists in St. Paul said Ethan would probably never walk on his own without some sort of support, his mother said.
He was scheduled for a dorsal rhizotomy, a surgery that involves severing the nerves at the base of the spinal column to calm his spastic muscles.
But the surgery would require a six-week rehab stint in the Twin Cities, followed by months of intense therapy at home, and there was the risk of Ethan being left with numbness in his legs, his mother said. With Ashlee and older brother Connor, 7, also at home, she delved into her own research.
She found Xcell-Center, a private clinic group and research institute in Dusseldorf and Cologne, Germany, that specializes in adult stem cell therapy.
Radtke said she hadn't heard of the treatment.
"People don't know this option's out there," she said. "They think of stem cells, they think of embryonic. But this is drawn right from Ethan's own bone marrow."
After the marrow is collected from the hip bone with a thin needle, the stem cells are processed in a lab and injected into the patient's spinal fluid. From there, they travel to the brain, where it's believed they replace dead cells and help injured cells recover.
The treatment sounded promising, but Radtke initially put the idea aside because of its cost - about $12,000, not counting travel expenses, which bring the total closer to $20,000.
Her inspiration to pursue the treatment came from testimonials from other parents, including Ashley Fruits, a Kansas woman she befriended in an online support group.
Fruits' 3-year-old son, Marcus, has cerebral palsy spasticity in his legs and arms and, like Ethan, had to use a walker.
Eight days after surgeons at Xcell-Center re-inserted his stem cells, Marcus was walking across the room without help, "just like it was natural," Fruits said.
"It was an amazing feeling," she said.
Dr. James Carroll, chief of pediatric neurology at the Medical College of Georgia, which has done extensive stem cell research, said parents contact him several times a day wondering if they should travel abroad for stem cell treatments.
He said he can't recommend it one way or the other "because there just is not anything in the medical literature that says, from a clinical proof standpoint, that it works."
Carroll said he knows of no current U.S. human trials using bone marrow stem cells to treat cerebral palsy. Researchers at MCG in Augusta, Ga., are studying the process on animals, but they're not far enough along to say whether it's promising, he said.
In February, MCG announced the first U.S. Food and Drug Administration-approved trial to determine whether children with cerebral palsy may benefit from being infused with stem cells from their own umbilical cord blood.
It won't help Ethan. His parents, like many expectant couples, declined to pay to have their children's cord blood frozen and preserved. Radtke now says she believes doctors should place a greater emphasis on the potential benefits.
Carroll said results from the cord blood stem cell study won't be known for at least a year.
"If it could be shown to be effective, I don't think the FDA would drag their feet on it," he said.
Radtke said she realizes the Xcell-Center treatment isn't a sure bet.
Of 100 Xcell-Center patients with cerebral palsy who had stem cells injected into their spinal fluid,
67 percent reported improvements. Slightly less than half reported less spasticity in, and better use of their legs and feet, and nearly 44 percent reported walking better after the procedure, according to its website.
Radtke said she's not expecting a miracle, but she hopes the treatment will at least improve Ethan's balance and allow him to walk with crutches again.
"He got every train that he had wanted and asked for," she said. "But now we're really hoping that we can give him that second wish."
How to help
The family of Ethan Radtke is accepting donations to defray the medical and travel expenses of their trip to Germany for Ethan to receive stem cell treatment for cerebral palsy. Donations can be made online at www.giveforward.org/ethanwantstowalk or at any Wells Fargo bank location to the Ethan Radtke Benefit Donation Fund.
Readers can reach Forum reporter Mike Nowatzki at (701) 241-5528