Thursday, July 10th 2008, 5:30 PM
Dianne Brown with a portrait of her daughter, Jewel Sulker, who has faced multiple medical challenges since her birth 10 years ago.
Dianne Brown with a portrait of her daughter, Jewel Sulker, who has faced multiple medical challenges since her birth 10 years ago.
Jewel Sulker has a million-dollar smile that fits her middle name, Sunshine.
However, the 10-year-old has no colon, no genitalia, no cervix, and has a bladder so small it's like she has none.
She's mostly deaf, her kneecaps are on the side of her legs, and she has scoliosis, or curvature of the spine.
She wears a colostomy bag and a renal port (for dialysis) on her small frame, and has a shunt, or tube in which drugs can be inserted, in her neck that goes to her carotid artery.
Jewel doesn't speak. She took her first steps two years ago. She weighs 36 pounds and stands the same number of inches tall.
She has had so many surgeries that her medical records "come in volumes," said her mother, Dianne Brown. "We may be up to 13 volumes now."
Jewel, who spent most of her first five years in the hospital, missed posing with her mom for the photo that accompanies this article because her blood pressure fell so low that she had to be hospitalized at SUNY Downstate Medical Center the day it was taken.
"They think she might have an infection around her shunt," Brown said.
Brown is hoping there are several nonemergency hospital visits to come - long-awaited stays during which Jewel will be the beneficiary of cutting-edge medicine that will give her a kidney, a bladder, cervix and other organs that will allow her to live a near-normal life.
"God brought my baby here, and he's keeping her here for a reason," said Brown, 51. "My daughter lights up any room when she walks in. People love her. The kids around here love playing with her."
The family has found an ally in Brooklyn Sen. John Sampson, who Brown said has spoken to several doctors about Jewel.
"Jewel is just amazing," Sampson said. "What you see is this young girl who has no idea of the severity of what she is going through. She just has that smile on her face. A lot of older people would have given up on life."
Brown attributes Jewel's maladies to a hormone therapy drug she took while she was unaware she was 19 weeks pregnant.
"I was the same size as I am now," Brown said, motioning at her svelte figure. "I was 39 years old, so you know it was a surprise."
Sonograms showed the fetus had large cysts in her kidneys, rendering them useless.
More problems became apparent when the 8-pound child was born on Dec. 1, 1997.
"When she was born, they told me it was a boy," Brown said. "Then they came back and said it was a girl. Then they came back again and said they didn't know what she was because she had no prominent genitalia."
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I feel so bad for this little girl, but yet she's STILL smiling, just look at that picture. This just goes to show us all that we should be thankful for even the small things, like walking, talking, and being able to go to the bathroom
07-24-2008
:notworthy:
