Partners in Survival

Story posted May 03, 2007 - 23:10:55 EDT
from Local Newspaper, News & Reporter

. Fanconi Syndrome

Martha Worthy, left, and her daughter, Markita.

Mother, daughter beat illness for 29 years and counting

By Stephen Guilfoyle editor@onlinechester.com

Markita Worthy celebrated her 31st birthday a few weeks ago.

Not a big deal for most people, but it's a big, big deal for this little Chester woman and her mother. It's only about, oh, 29 more years than doctors ever gave her to live.

She's struggled with medical conditions her whole life, some so rare it took doctors a while to diagnose her. But she's trying her best, despite some lingering problems, to make a life for herself. She's had some help getting through those 29 years. Some in her family say it is the power of prayer. But her mother Martha has been a constant presence by her side. Martha had two other children before Markita who had no medical problems. She had two others since Markita, who had no medical problems.

“I love all my children the same,” Martha said. “But she needs me more.”

She was diagnosed with Fanconi's syndrome when she was 2 months old, in 1976. According to the HealthAtoZ Web site, “Fanconi's syndrome is a set of kidney malfunctions brought about by a variety of seemingly unrelated disorders. The malfunctions lead to excessive urine production and excessive thirst, resulting in deficits of water, calcium, potassium, magnesium, and other substances in the body. It often leads to bone disease and stunted growth.”

Markita has faced many of those situations, but getting it so young, it caused other complications. She's been in and out of hospitals throughout her life, in Los Angeles and in Charleston when she was very young and Gainesville, Fla. and Chapel Hill, N.C. throughout her life. She's been in intensive care units two or three times.

She's had renal biopsies to see what type of problem she had when she was young. Doctors told her mother to be prepared. She wouldn't make it past 2-year-old, she was told. Martha said she didn't listen to that kind of talk. But she did pray a lot, and continues to pray for the woman she calls “her little angel.”

Some of the things she does to keep her Fanconi's in control might seem odd. She takes sodium bicarbonate to get carbon into her body. She takes Tums every day, sometimes to help settle her stomach but every day to get extra calcium that is being washed out of her system. She has to drink milk to get phosphorus into her system.

She takes 17 pills four times a day and has to drink half a gallon of liquid every day.

Some are the seemingly innocuous household items like the Tums and milk. But there are also some serious prescriptions. She takes the antibiotic cipro, for example. That's the pill that supplies were laid out for when there was an anthrax scare in Washington DC after Sept. 11.

The breakdown of her kidney has effected her liver, and she has cirrhosis. She has irritable bowel syndrome and has recently developed chronic obstructive pulmonary syndrome, affecting her breathing.

Still, she plugs on.

She's held several jobs. Some she can just do, others she has to have a little help or an adjustment. The local office of the Vocational Rehabilitation office built her a ramp for her latest job. She works the register at Bi-Lo, and she needs to get a little higher.

She used to be a popular waitress at Captain's Galley on the Bypass. Children would think she was also a child, and would ask their parents to go to the restaurant with “that kid.” She worked at both McDonald's in Chester County, working in the line and working the counters. She did dress up as the Hamburglar once in that job. She had some fun with that, and the kids loved it again. She's worked at Huddle House, Burger King and the Target in Rock Hill.

Markita graduated from Chester High School, on time. She had some tutors who helped her when she couldn't be in school. But she's a voracious reader, even now. She has a pile of magazines about as tall as she is.

She's taken some classes at York Tech, but never finished. She's thinking about going back. She said she might like to be a nurse, perhaps working with babies, or go into journalism. She's a poet, and is insisting on The N&R breaking its policy against accepting poetry. “We'll talk about it one day,” she says, a confident tone in her voice that says she'll get what she wants.

She doesn't drive. Yet. She's in class, but is waiting on some extended pedals to assist her. She started at Bi-Lo in February, and loves it. They love her too, she says. Her problems have flared back up lately, so she's been out of work for a while. She's hoping to get back. She thanks the people at the supermarket for supporting her. The manager of McAliley Apartments summed Markita up quickly. “She's in to everything,” she said. “Always something new.” She sews and wants to sell her sewing.

She had a bad spell in 2001. She started filling up with fluid, and that's when her liver was damaged. She had a tube inserted to drain the fluid. She's been getting some tests done to see what is happening now. there was a fear she might have developed some kind of cancer, but that test was negative.

In the midst of those tests, she took a day off to talk to The N&R. A few days later, she dropped back by the paper, and she'd had her hair done, some light streaks put in.

Markita was 8, Martha said, when things seemed to just get good, when the worrying didn't dominate anymore. She looks at her daughter and said she's never been held back by anything since then.

The doctor ran a test once and her potassium levels were so bad, the doctor said then she should have been dead. But she was alive, sitting there. The doctor ran the test three times to be sure, and cried along with Martha when, despite that test, the little girl was alive and functioning. “We've been through a whole lot together,” Martha said. “I love all my children the same, but she takes up more time than the rest. She can't do but so much.”

That time, when she was 8, Markita came in and asked to sleep in her mother's bed. She took a bad turn that night, but the girl was in her bed for some reason. “God always let me know,” she said. There was some hospital time, but it just turned around after that.

Her size was a bit of a problem in the family, she said. She does have a little problem, she said, with her younger sisters being so much taller than her. But her brother is her best friends, she said. But he grew up, too quickly reaching an age and size when she couldn't discipline him when he needed it.

“He used to think I was a child like him,” she said. She wasn't supposed to live, her mother said. Not supposed to walk or talk. “Praise the lord, she did it all,” says Martha. She's on a list for a liver transplant, so they are waiting on the doctors again. But Markita has plans. There's the books she wants to write, including an autobiography. There's poetry. And she wants to expand the Web page her brother Anthony created for her. She wants to get information out about Fanconi's syndrome. Because it is so rare, other people who have it might not know there are others who have suffered the same.

“I've never met anyone like me. They need help. I want to be there for somebody else,” she said, casting a quick glance over at her mother. Like somebody was there for her.

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