Four years ago, Brad and Dana Opp of Tiffin welcomed a son, Konnor, into the world. Although Dana had a normal, full-term pregnancy, her doctor was concerned about the 8-pound boy, who was jaundiced and dehydrated.
Life Flight was summoned to transport Konnor to St. Vincent Mercy Medical Center in Toledo.
After more than a week, he was released. The Opps took Konnor for his first visit to a local pediatrician, Prasad Kakarala. The baby's high bilirubin level sent him back to the newborn intensive care unit at St. Vincent for three weeks and numerous tests.
PHOTO BY MARYANN KROMER
Konnor Opp (right) gives a hand signal while his dad, Brad Opp, offers encouragement.
"He had three specialists - an endocrinologist, opthamologist and neurologist," Brad said.
Konnor was diagnosed with septo-optic dysplasia, or SOD. Its cause is unknown, but research suggests genetic and environmental factors are involved. Something goes awry in the early stages of brain development and structures in the brain do not develop or remain underdeveloped.
The condition is characterized by small optic discs and optic nerves that result in blindness.
Konnor's hormone levels also were below normal. His pituitary, thyroid and hypothalamus were inactive or minimally functioning. His kidneys were not retaining a normal amount of water, a condition called diabetes insipidus. Excessive urination and dry skin resulted.
Poor muscle tone, delayed intellectual development and seizures are other symptoms of the disorder, which occurs in one out of 10,000 newborns, according to the National Institutes of Health.
Once the diagnosis was made, Konnor was given medications to regulate his hormone levels and urine output. The Opps had to test Konnor's urine for specific gravity in order to give him desmopressin at the correct time. The medicine came in a liquid form and had to be stored chilled.
"Now it's in a pill form. At first, we had to blow it up his nose," Brad said.
Dana is a licensed practical nurse, so she was able to give Konnor the care he needed at home and to teach Brad how to help.
Every three months, Konnor had to check in with three specialists in Toledo.
The Opps even moved to Toledo to be near their son's doctors and to take him to Penrickton Center for Blind Children in Taylor, Mich. Physical therapy, speech therapy and occupational therapy have improved some of Konnor's symptoms.
"We had them show us the therapies, and we have the equipment we need at home," Brad said.
The equipment includes a stander, to support Konnor as he learns to balance himself, and a special wheelchair to transport the growing boy.
But his doctors said no treatment was available for his vision. He has no visual cues to help him walk or to imitate gestures of other people. About 90 percent of early learning is through vision.
Konnor has learned a few hand signals.
"He has really good hearing. He is not very verbal, but he understands everything we say," Brad said.
Konnor developed another challenge in January 2009 when he became irritable and sluggish. Brad said his son also had trouble eating and swallowing. Konnor's doctors discovered he had developed hydrocephalus. They implanted a shunt to drain the excess fluid from his ventricles to ease the pain and swelling.
Konnor responded well to the treatment.
To learn more about SOD, the family joined online support groups and read about a procedure being done in China, using umbilical stem cells. About 20 children who already had been treated were recovering their sight and cognitive skills with "miraculous" results.
"The stem cells not only help with vision. They also build nerves to help with walking, talking and behavior," Brad said.
They contacted Dr. Kara Zhang of the Shenzhen Beike Biotechnology Co. to request stem cell treatment for Konnor. A surgeon spent three hours with the couple on the phone and asked for copies of all of Konnor's records. After he reviewed them, he agreed to take Konnor as a patient.
The company sent the Opps an acceptance letter, but they and Konnor would have to come to China and stay about a month. The procedure and follow-up therapy would cost $26,000, not counting air fare.
Benefits have taken place to generate funds for Konnor. The most recent event, last month at Thiel's Wheels in Upper Sandusky, generated $743.
Konnor's grandfather, Pat Fitchen, explained what he knows about treatments the little boy is to receive.
"They take gene cells from Brad and Dana and splice them. The key would have been to save Konnor's umbilical cord. They could have gotten (the cells) from that, but we didn't know at the time," Fitchen said.
Umbilical cord cells can be saved and frozen to be used for future illnesses. Stem cell treatments are said to cure cancer and many other diseases, but they have not been approved for SOD in the United States.
Once the stem cells are generated from his parents, Konnor is to receive six IV infusions over two weeks. The treatment gives the best results if done as early as possible in the child's life.
In SOD, the corpus colossum, which connects the hemispheres of the brain, does not fully develop, but stem cells have been shown to stimulate those neurons to resume its growth.
"He'll have to have continuous therapy afterward. It's a regrowing process. ... to catch up with where his body is," Fitchen said. "Your retinal disc is supposed to be the size of a pencil eraser in circumference. When Konnor was born, his was only the size of a pin drop, so there was no focal point. Then around that are millions of nerve fibers. Well, Konnor's only got a few hundred nerve fibers, so they never completely grew. With the stem cells, they can regenerate or complete the growing process."
The Opps recently moved back to Tiffin, but a friend in Toledo, Riz Pack, has planned more benefits for Konnor. A car wash is set for noon-5 p.m. Sunday at Express Lube, 4936 Douglas Road, Toledo. Another benefit is Oct. 19 at Chuck E. Cheese, 5077 Monroe St., Toledo.
Locally, donations for Konnor can be made to Sandy Fitchen/Konnor Opp at First Merit or to Konnor Opp at Fifth Third Bank branches. Collection jars have been placed at Rent-A-Center, Java Rave and A.J.'s Pizza in Tiffin.
The family also has T-shirts for sale. A website, sightforkonnor.
webs.com, has been set up to post updates.
For more information, e-mail firstname.lastname@example.org or call (419) 447-1005.