Madison Selmani is a LiveR Champion. From the moment she was born, five-year-old Madison has been struggling to live a normal, pain free life. This little girl, who lives in Bethel with her parents and two sisters, will be entering kindergarten in the fall. Her mother Kristen Selmani, originally from Norwalk, has more than the usual share of concerns.
“Her immune system is suppressed,” Kristen said, holding Madison in her lap. She continued, “When they give vaccines at school, she has to stay home.”
Madison has a genetic form of liver disease, with both parents being carriers, that manifested right after she was born. Many children are jaundiced when they are born, but unlike most babies, Madison’s did not clear up.
Kelsy, Madison’s oldest sister, remembers when Madison first came home from the hospital. “We used to have to stay outside with her in the sun because she was yellow, even her eyes were yellow.”
After a few weeks, doctors determined that Madison’s bilirubin numbers were escalated, and the tests and medications began. “I just remember her crying all the time,” her mother said. “She was so itchy we had to cover her hands, and she pulled at her ears until they bled.”
Kristen said the hardest part in the beginning was finding a doctor who understood what was happening. The first doctor they’d had said, “Is she just itchy?” Kristen’s face clouded in anger as she remembered the moment. “Madison was scraping the skin off of her face, and he was asking ‘Just itchy’?”
The itching was a symptom of the disease and the doctor recommended Benadryl which made Madison sleepy, but it did little to relieve the itching. “Each day I thought, ‘I can’t bear to watch her do this to herself anymore.’ It was tearing me apart,” Kristen said.
Madison finally underwent a procedure called Partial External Biliary Diversion that relieved the itching for a while, however, it eventually came back. Her liver numbers once again elevated, two-year-old Madison was admitted to the hospital where she stayed for almost two months, until she was lucky enough, in July of 2009, to receive a liver transplant.
Only 42 days after the transplant, Maddie developed steatosis, which Kristen was able to treat with a gluten-free and Omega rich diet and other foods. However, it has come back once again, and on Tuesday, doctors will attempt to treat her with a bile drain, which should help to remove the fat that has started to accumulate around her liver. As the bile drains, so will the fat, according to Kristen.
Right now, there is no known cure for Madison’s disease, Kristen said. Her entire life of five years has been colored by her illness. Her drawings of herself in the hospital bed are filled with details. After lunch, she pulled out the scale to see if she is gaining weight, since that has not been easy for her to do. A trip to Lake Compounce last week left her unable to participate in swimming for fear of infection, and by the end of the day, she was painfully exhausted.
Madison’s sister Kassidy, only 10 months older than Madison, developed severe anxiety during the time Madison and Kristin stayed at the hospital. She was asked if her sister experienced pain sometimes, she said, “She is in pain all of the time.”
Mendi, Madison’s father, originally from Stamford, had to take extensive time off from work to stay with the other two girls while Kristen was in the hospital with Madison. “I was lucky I didn’t lose my job,” he said.
Sitting on the couch with a pen and a piece of paper, Madison drew pictures. Some were of the hospital, but one was for everyone to guess. She said, “It is a robot. And it never goes to the hospital, it never got sick. And it goes to the park by itself.”
The family has set up a website to raise awareness of the disease and is taking part in a walk sponsored by the Liver Foundation. “The disease is so rare. We are trying to raise money for all of the different types of liver diseases. So many are misdiagnosed and left untreated,” Kristen said.
Visit the website to learn more about the Liver Life Walk at Commons Park at Harbor Point in Stamford on September 30.
To send a note of support to Madison, click here to visit her Facebook page.