Brooklyn, NY – Senator John Sampson and Dianne Brown, the mother of 10-year-old Jewel Sulker, is pleading with doctors to step forward to save the young girl’s life.
“The beautiful, diminutive girl weighs 36 pounds and is as many inches tall,” said Senator John Sampson (D-Brooklyn), who represents Jewel’s Canarsie neighborhood. “She is suffering with so many ailments and adverse medical conditions it is sometimes amazing how she is still alive, but for her fighting spirit.”
Among Jewel’s medical problems are: no colon, no genitalia, no cervix, no kidneys, a vastly undersized and deformed bladder, her kneecaps are on the side of her legs, has scoliosis, (curvature of the spine), wears a colostomy bag, a renal port for dialysis and has a shunt to easily administer life-affirming medicine in her neck leading to her carotid artery. Jewel doesn't speak and is mostly deaf. She took her first steps only two years ago.
“I was really astonished by the number of abnormalities placed upon this young child and it is amazing that she has a spirit and energy,” continued Senator Sampson, the ranking member of the Senate Health Committee. “It breaks your heart when you look at her but she does not let this dismay her in her routine and activities. I am seeking help from the medical community domestically and internationally to assist Jewel in obtaining an operation or some innovative medical procedure to help her deal with the abnormalities that she faces. When you think about it, throughout this country there are very few babies who are born with such severe abnormalities and survive. Jewel may be the only child in the world living with so many medical abnormalities.”
Approximately 150,000 babies are born with defects each year in the United States. There are more than 4,000 different known birth defects ranging from minor to serious and although while many of them can be treated or cured, they are the leading cause of death in the first year of life.
“My daughter continues to defy medical logic,” said Jewel’s mother, Dianne Brown. “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.”
Prior to conception, Jewel’s mother publicly disclosed that she was prescribed a hormonal-based drug therapy to combat the irregularity of her menstrual cycle. She’s been taking the medication for approximately 10 years. After a routine check-up with her doctor, it was discovered, at age 39, that she was unexpectedly pregnant – 19 weeks pregnant. The excessive hormones in her system, especially during the first trimester, may have contributed to Jewel’s birth defects.
Jewel’s mother, Dianne, is hopeful she could lead a more normal life, given the recent advances in medicine. In addition, four of Jewel’s immediate blood relatives have all been tested as possible kidney donors and all were found to be compatible.
Senator Sampson said: “I don’t want us to let this young girl down. I want us to be able to let her know that we have done everything possible to put this girl into a position where she can at least survive. This is life-threatening because she was not supposed to live this long. The clock is ticking. She is in need of a kidney transplant but in order for her to have a kidney transplant we have to deal with some of these abnormalities in order for the kidney transplant to be successful.”
Senator Sampson is asking specialists or health organizations interested in assisting with this matter to immediately call his district office at (718) 649-7653.