ShawneeDispatch.com

Four-year-old Koda Rentschler is like most any boy his age – full of energy and ready to play.

“He didn’t act like anything was wrong,” his mother, Yvonne Rentschler, says. “He’s a very active kid.”

Last year, however, reality changed perception.

Although the Rentschlers, recent transplants to Kansas City, Kan., from Shawnee, were always concerned about the birthmarks that were scattered over Koda’s body, it wasn’t until last year that they learned their son had neurofibromatosis.

It is a sometimes life-threatening disease that causes tumors to grow throughout the body.

It also is a disease that is relatively little known, something that Yvonne Rentschler hopes to change.

Through a motorcycle ride this fall, she wants to gather support to increase awareness and support for those struck by the disease, which has no treatment or cure.

Koda was born May 5, 2005. Yvonne Rentschler said there were no problems during the pregnancy, and Koda’s only problems during his infancy were jaundice and some interesting-looking marks on his skin.

“Dad and mom both have birthmarks, so we didn’t think too much of it — just thought he had multiple ones,” she said. “When I asked the pediatrician about them, he said, ‘It could be a disorder; we’ll just have to sit and watch.’”

As he grew, Koda developed normally but was prone to ear infections and the croup. In February 2008, the family took him to Children’s Mercy Hospital South because he was having problems breathing. The doctor immediately became interested in Koda’s birthmarks, which Rentschler now knows are called café-au-lait,

“The ER doctor, he started counting his spots, and I knew then,” Rentschler said. “… something was up with all these little birthmarks.”

The doctor asked if Koda had been diagnosed with neurofibromatosis, and after learning the family had never heard of the disease, also known as NF, he urged them to get Koda checked out.

“He didn’t go into great detail, but he made sure to clarify: this thing could cause death,” Rentschler said. “Of course, I’m devastated just hearing that.”

Koda was quickly taken to an ophthalmologist because pigmentation spots in the eyes are another indicator of NF.

Koda didn’t have the spots, but he did have an abnormal optic nerve — and optic tumors also are an NF indicator.

Koda then got a CAT-scan, which showed a mass in his neck. That was followed by an MRI, which showed that he had a plexiform neurofibroma, officially giving him an NF diagnosis.

“It’s one of these tumors that NF kids can get, but it’s the worst kind of tumor, next to having cancer,” Rentschler said. “They are benign, but they can become malignant at any time.”

The tumor starts at Koda’s C2 vertebrae on the left of his throat and runs into his chest cavity. It presses up against his airway and surrounds his carotid artery. NF tumors are typically slow growing, but plexiform tumors are more complex, crocheting themselves around internal organs. Koda’s is growing faster than most.

“It’s like a bag of worms… it can drill itself through the bone and deform the bone,” Rentschler said. “And there’s no treatment, no cure; you just sit and watch this darned thing grow until it becomes life-threatening.”

Doctors don’t like to cut out or cut down the tumors because they generally grow back faster than they started, and Koda’s cannot be removed completely because of its position around his carotid artery.

Koda now has a second tumor growing on his spine, a neurofibroma, and NF likely will cause more of these tumors to grow.

Koda’s type of the disease, NF1, occurs in one of every 3,000 births, according to the Children’s Tumor Foundation Web site, ctf.org. Since his diagnosis, the Rentschlers have learned how common the disease is.

“At the pool, we met three kids last summer that have it,” Rentschler said.

The Rentschler family also learned that the secretary at their church, Crossroads Christian Church in Shawnee, had struggled to get her daughter officially diagnosed with NF. However, the Rentschlers have discovered there isn’t much of a support network for NF patients in the Kansas City area.

The Rentschlers also have traveled to St. Louis because there aren’t NF specialists in Kansas City, and they tried a clinical trial for a tumor-shrinking drug called gleevac in Indianapolis, though it didn’t work for Koda.

Confronting the reality of no cure and no approved treatments, Rentschler said she wants to get Kansas City involved.

“It’s imperative for Kansas City to do something, because we haven’t done anything,” she said. “That’s what I’m trying to do, so we can get these local people together and be a support group for each other. It’s nice to have a support group that knows what you’re going through.”

Most people with NF aren’t diagnosed until they are in their teens through mid-20s, Rentschler said. That makes it important for more people to learn about the disease.

Rentschler is in the midst of planning an October motorcycle ride to raise funds for NF awareness, and she hopes to make the event an annual one.

“My purpose is just to get awareness out,” she said. “A lot of people don’t get diagnosed because they don’t have any signs to cause them to get diagnosed.”

NF AWARENESS RIDE

The motorcycle ride will begin at 3 p.m. Oct. 24 at Crest Bible Church, 4835 Gibbs Rd., Kansas City, Kan., and end at Riverfront Park in Atchison. Registration will begin at 2 p.m.

Registration is $20 for a single rider, $25 for two riders, and $30 for a car. All proceeds will benefit the Children’s Tumor Foundation.

For more information, visit active.com/donate/racing4research2010/teamkoda, or contact rentschler at therentschlers@gmail.com.

Comments

1. 

   jennithebaker (anonymous) says…

   Hi, my name is Jenni and I also have Nf1, I was diagnosed at 2 years or younger. I think it's great that this is being done! We need so much more word than we do now. It's more common than so many things and yet people and doctors are clueless.
   Hope the word gets spread with this article! Thanks so much!

   September 2, 2009 at 1:52 p.m.

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