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DEL.ICIO.US“Mother plans to put her feet, legs to work to save her son’s eyes”
The Atlanta Journal-Constitution
She didn’t muster up the courage to have her son’s eyes examined till he was a kindergartner.
Rhonda S. Timko knew a good chance existed that Max might have choroideremia (pronounced core-oid-uh-ree-mee-ah), a disease that causes blindness. It’s in the family. Her brother, Bernie Nutter of Columbus, Ohio, has it. He was declared legally blind at 38.
“He has three kids of his own,” said Timko of Lilburn. “Now he feels like he’s another one of his wife’s kids. He can see a little. He goes to church and he literally starts to sweat when they start passing the basket. He doesn’t see it. It’s humiliating.”
The disease is caused by a defective gene on the X-chromosome inherited from the parents. Timko doesn’t have the disease, but she’s a carrier. So there was a 50-50 chance that Max, 9, would inherit it. The disease only affects males.
April 13, 2003.
Max has an appointment to see Dr. Joseph Andersen, the Timko’s opthomologist. The retina of a person who has, or carries, the disease looks different - “sort of a lumpy-looking appearance” - said Timko, a married mom of three. Andersen examines the tyke’s retina in a dark room.
Then he signals “yes” to mom.
“I lost it right there at the doctor’s office,’ she said. “At the tender age of 5, Dr. Andersen could tell his retina didn’t look right.”
Timko has spent the last four years educating herself about choroideremia. The rare genetic disorder affects about 5,000 people in the United States and, she learned, there’s scant research and money to pursue a possible cure.
Five years ago, Timko used to be an avid jogger. She’s slowed in recent years, though, due in part to two foot surgeries and a leg surgery.
Now, she’s lacing up again, just like you or I would if Max were our child.
On Nov. 11, she and six friends plan to run the 2007 Outer Banks Marathon in Kitty Hawk, North Carolina. The group is raising pledge money for the 26.2-mile run that will benefit the Foundation Fighting Blindness, a nonprofit whose Web site says it funds research for the prevention, treatment and cure for inherited retinal degenerative diseases.
The marathon itself is not related to their cause. The “Choroideremia Challenge” hopes to raise $25,000.
“I saw my brother go through this and I said, ‘OK God, there’s got to be a reason for this,” said Timko, the team captain. “God doesn’t give you things to deal with for no reason. There’s no support group for this. There’s one other guy in [metro Atlanta] who has it - Erik Weinstock - and we’re taking him with us when we go to the marathon.”
Weinstock, 46, of Atlanta, got his diagnosis in 1975. He was declared legally blind at 25. Nine years ago, he stopped driving. He learned how to use a cane, cook, take a bus, use a computer and other skills at the Center for the Visually Impaired in Atlanta.
He’s the treasurer of the Choroideremia Research Foundation, an international nonprofit that supports eye-disease research. He thinks what Timko’s crew is doing is great.
“Anybody who gives a dollar, I say thank you very much,” he told me.
When it comes to Max’s education, Jerry and Rhonda Timko move at break-neck speed. She home schools the fifth-grader, as well as his two sisters. Max’s already learning pre-Algebra. They want him to get his high school diploma as soon as possible, then move onto college, a la the Rev. Martin Luther King Jr. See, there’s no telling how progressive the disease will attack.
“My brother struggled like mad in college with the reading and everything, so we are moving him as rapidly as possible through the curriculum,” Timko said.
“In case there’s not a cure.”
To donate, contact Rhonda Timko at 770-979-0637. For more information, visit www.fightblindness.org./goto/rhonda or www.choroideremia.org.
Rick Badie’s column appears on Sundays, Tuesdays and Thursdays. Contact him at 770-263-3875 or e-mail: rbadie@ajc.com.
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By Francesco Sinibaldi
November 3, 2007 4:04 PM | Link to this
Searching for an answer.
The whisper of a sibilant wind imagines, feeling the cold and when a light fades away, beautiful moments of a fearless and courageous wonder, describing a dream, and waiting for a meaning; but a weeping returns, and that’s in your mind, like a glimmer of hope and a delicate sadness recalling the past in the light of a wisdom.
Francesco Sinibaldi