At just over 3 feet tall and weighing in at 36 pounds, Jewel Sulker looks like a typical toddler at first glance, but she’s actually an 11-year-old with a unique situation and the heart of a lion. Jewel requires around-the-clock care for her numerous ailments and conditions, which include hidden genitalia, scoliosis, lack of a bladder, a horseshoe kidney, and missing two-thirds of her large intestines. In addition, she’s deaf and she hasn’t spoken a word since she was 3 years old.

Though Jewel only verbalizes in grunts and other noises, her mother, Dianne Brown, told the AmNews that Jewel definitely knows how to express herself. “She may not be able to speak, but she gets her point across. Her facial expressions tell you everything you need to know,” said Brown with a laugh as she spoke about how popular Jewel is with the kids in the neighborhood (she’s the resident rope turner for double Dutch), how she likes to play video games and how she loves to wear pink, sparkly, girly things.

Being able to enjoy life’s small moments is something many adults find difficult to do, but Jewel, who has endured more than 50 surgeries in her young life, clings to the only things she knows–the present. “No doctor has ever seen a case like Jewel’s. She’s basically a living medical miracle. They could probably teach a whole class on her. Nobody really has an idea about life expectancy. The most we can do is just enjoy her and make sure she is living the best life she can. When I look at her, I know I will never see her at her wedding or see her have her own children, and it’s difficult,” said a tearful Brown.

Brown believes that Jewel’s condition was due to side effects from Provera, a hormone treatment for pre-menopausal women. Brown was married at the time and had been on the drug for years (she has an adult daughter) and was very surprised to learn that she was pregnant. “It was quite a shock to learn that I was pregnant, and I truly believe it was the Provera that caused Jewel’s condition. Nobody ever warned me about those side effects,” said Brown, who had a lawyer some years ago, but to her knowledge no lawsuit was ever filed on her behalf.

Jewel is being raised by a single mom in East New York with the help of nurses who are there for 22 hours a day, everyday. Even with the extra hands, Brown still finds herself physically and emotionally drained. Last year, she turned to State Senator John Sampson for help. Sampson raised money for Jewel’s care–according to her mother, medical bills have topped $5 million–got media attention for Jewel’s unique situation and suggested a doctor to Brown.

“Doctors had been unwilling to take Jewel on as a patient. I think doctors were afraid to be associated with someone whose medical complications were so unique. They didn’t want to fail and be associated with that failure,” said Sampson, who is working on legislation to try universal healthcare on a local level.

Brown told the AmNews that Dr. Joseph Borer of the Children’s Hospital in Boston has been a godsend for Jewel. “Dr. Borer and his staff have been so accommodating and so nice to us. I’m a single mom and I don’t have a lot, so when we have to go out there for Jewel’s tests, they make sure I have a place to stay and that everything is taken care of,” said Brown.

The AmNews reached out to Dr.Borer, but the hospital’s public relations department was not able to comment in time for publication of this article.

Jewel’s last trip to Boston was in late 2008.Doctors wanted to see if Jewel was a good candidate for a kidney transplant, but they determined that she would have to have a bladder constructed first.

Her latest setback has landed her in Downstate Hospital, where she has been a patient for years. Just last week, Jewel was rushed to the ER with severe stomach pains and had blood in her stool and vomit. She is currently in the intensive care unit while the medical team tries to determine the cause of her condition.

“It’s very frustrating. Nobody ever really seems to know what to do because my baby’s case is so unique. So now I’m just going to sit here and wait to talk to the doctors who are in charge,” said Brown, who has spent most of her waking hours at the hospital for the past few days.

If you would like to contact Jewel or Dianne Brown, send an e-mail to Arealjewel7@aol.com.