You wouldn’t think anything was wrong with little Jewel Sulker when you first meet her, but her mother and a state senator have been desperately scrambling to save her life.
“Her doctors never saw a case like this,” said Senator John Sampson, who was approached by the girl’s mother, Dianne Brown, for help. “Any adult would have given up on life by now.”
“Today I am asking for the medical community and the public to get involved and give this girl a better life,” he said.
Jewel was born with a shocking number of medical problems that have proven so intimidating to doctors that few have been able or even willing to help, according ot her mom, and her insurance will not cover much of her treatment.
At 36 inches tall and weighing fewer than 40 pounds, the 10-year-old appears to be a toddler. Jewel was born with no colon, genitalia, cervix or kidneys and she has a deformed spine, bladder and knees. She is also mute and mostly deaf from a decade of intense antibiotic treatments.
At a press conference last week, Sampson and Brown once again reached out to the medical community to get Jewel the help she needs to live a normal life.
“For 10 years, I’ve been trying to find someone to help extend my baby’s life,” said Brown as she wiped the tears from her face.
Jewel, who reads lips to communicate and only walked for the first time two years ago, sat patiently on a little pink stool posing for the camera.
“There are so many things she doesn’t have,” her mom continued, “But what she does have is a great big personality.”
Brown was prescribed a hormone-based drug to combat an irregular menstrual cycle years before Jewel was conceived. But after a routine check-up with her doctor ten years ago, she discovered she was 19 weeks pregnant.
It is believed that the excessive hormones in Brown’s system during her pregnancy contributed to Jewel’s birth defects, which are so severe that doctors have been reluctant to treat her.
“Why has this taken 10 years to get her help?” Brown asked, visibly upset. Senator Sampson suspected that no doctor wants to put her or his reputation on the line with such a unique case, but he was optimistic that it could be done.
“We need to put a team of doctors together to make a diagnosis and then we can put the treatment together,” he said.
Sampson stressed the idea that technology has advanced enough in recent years that life-saving treatments are available, and he implored those medical professionals to step forward.
He even mentioned his and Governor David Patterson’s support of stem cell research and the doors to treatments that it would open.
“Not only is this for Jewel, but it is for all other families with kids like Jewel,” he said.
Each year, approximately 150,000 babies are born with some level of birth defect, according to the Center for Disease Control and Prevention. And over 5,500 infants die from these abnormalities annually.
But Jewel’s extreme case has been both a wonder and a stumbling block throughout her life.
“My daughter continues to defy medical logic,” said Brown. “But we are at a point where we’ve completely exhausted all options and time is running out.
“There has to be a medical specialist out there that can offer my baby hope and improvement in her quality of life.”
Specialists or health organizations interested in helping are asked to call Sampson’s district office immediately at (718) 649-7653.
