Dunbar Boy With Brain Disease Making Progress

By CHARLOTTE FERRELL SMITH

DAILY MAIL STAFF

A 6-year-old Dunbar boy who has been fighting a genetic brain disease for several months is making some progress, his mother said.

Nathan Morganroth has Adrenoleukodystrophy, or ALD. The disease has affected his vision, hearing and balance.

He began having symptoms last July with a lazy eye, stumbling and ear infections.

A local ophthalmologist who discovered he was legally blind in his right eye referred him to Women & Children’s Hospital for further testing.

In October, he was sent to Cincinnati Children’s Hospital and the diagnosis was confirmed. On Nov. 16, he had a successful bone marrow transplant.

"He has started to process some sounds," said his mother, Nancy Morganroth, a registered nurse. "We can’t tell what he can or can’t see. When an overhead light is on, he can track somebody. His eyes follow."

Nathan, who is being fed through a tube, also is undergoing occupational and physical therapy. He has a brace on his right leg and is walking with assistance. His physical therapy sessions also include the use of a scooter and a swing.

"He was so weak for a long time," his mother said.

"For six or seven weeks, he didn’t get out of bed. We did stretching exercises.

"His neurologist says there is usually no kind of improvement until after day 90 after a bone marrow transplant. After 60 days we saw some vision and hearing improvement. The neurologist said that was encouraging."

ALD is one of a group of genetic disorders caused by damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain. One of the first symptoms is a child’s inability to concentrate on simple tasks. Other symptoms are lack of coordination, seizures, headache, hearing loss, and blindness.

People with ALD accumulate high levels of saturated, very long chain fatty acids in the brain and adrenal cortex because they do not produce the enzyme that breaks down these fatty acids in the normal manner.

Bone marrow transplants can provide long-term benefit to boys who have early evidence of the disorder, although such procedures are considered risky.

Morganroth said the donor for her son was a perfect match and that is rare. Many children never regain functions that have been lost, but there have been cases with total reversal of symptoms.

"He is making slow progress," she said. "Our time frame is not necessarily God’s time frame of the healing process. What he gets back is what he is supposed to get back. Our idea of normal may not be God’s idea."

She noted that update’s on Nathan’s progress can be viewed by logging onto www.carepages.com and registering free with a user name and password. His care page name is nathansfight.

Meanwhile, family and friends have rallied around the family with prayers and support.

Friends are raising funds to help the family with lodging, travel and any unpaid medical expenses.

Orange and white bracelets embossed with "Nathan’s Fight" are being sold for $5 each. Also, donations may be made to the Nathan Morganroth Trust Fund at any Fifth Third Bank location. Contributions are tax deductible and donors may get a tax identification number.

For more information on donations or to order bracelets, email NATHANSFIGHT@aol.com or call 372-8550.

Contact writer Charlotte Ferrell Smith at charlotte@dailymail.com or 348-1246.