Toddler adapts to treatment, surroundingsby Cindy A. AbolePublic Relations Sijia Lee with Dr. Lyndon Key. Of the many things 22-month-old Sijia Lee has adjusted to, the simple act of standing and walking with the help of her mother, Wang Feng, is something short of a miracle for Feng and others to believe. She is on the brink of taking her first steps and has warmed to Western culture — reading books, watching television (Barney and the Teletubbies are her favorites), plus learning new words (English, as well as Mandarin). Ten months ago, Feng and her daughter left mainland China for America in a desperate act of hope. Sijia was diagnosed with a rare disease, infantile osteopetrosis, a condition that affects the growth of bones causing them to become dense but weak. Sijia came as a patient of Lyndon Key, M.D., director of pediatric endocrinology and MUSC’s General Clinical Research Center. Sijia’s contributions will help to enhance the knowledge and research of this rare bone disorder. “My greatest surprise is to see Sijia look so well,” said Feng, through interpreter Su Yang, Ph.D., who works with Key in pediatric endocrinology. “Coming to the United States was well worth the journey.” Today, Sijia’s health has greatly improved. Since April, Sijia’s weight and height have slowly increased. She continues to be seen by Key for a monthly checkup and receives physical, occupational and speech therapy. Since June, mother and daughter have been the guests of West Ashley residents Sunny and Samuel Steinberg. They have also benefited from the generosity of hundreds of Lowcountry residents, religious groups and organizations, receiving everything from clothes, toys and baby necessities to monetary donations which assists with her drug treatment. And the mother’s English isn’t bad, either. Each week, Feng attends English classes through an English-as-a-Second-Language (ESL) program sponsored by the Trident Literacy Association. She’s also an active participant in activities at James Island Baptist Church. Although she’s shy about her abilities to speak, she certainly understands how to love and care for her daughter, whether she’s reading a book with her child or administering Sijia’s daily doses of Interferon, a drug that fights infection and Calcitriol, which stimulates the breakdown and reabsorption of bone. Sijia’s next step involves the chance to secure a bone marrow transplant. Sijia must wait until she is two years old to receive this procedure. Today’s hope lies within her family. Sijia’s 9-year-old sister, Quan, is thought to be a possible donor. With help from social workers, private donations and Key’s office, Quan and her father, Hui Li, may soon be reunited with their family by early 2000. Steinberg and her family are joyous in watching Sijia’s progress. She has forwarded an e-mail photo of Sijia standing and taking steps to Feng’s brother, Wang Zhong Qui, the man who connected Sijia with Key from more than halfway around the globe in May 1998. Wang was able to verify the photo and pass along the good news to Sijia’s family. “Even if Quan is not a match, my only hope is for Sijia’s father and sister to be able to see their baby look well,” Feng said. “Sijia was a very sick child when she arrived here more than 10 months ago,” said Gale Horinbein, pediatric social worker, MUSC Children’s Hospital. “Today, she’s much healthier: Sijia’s learning to walk and thrive as a young child. It’s really amazing to see the positive outcomes of Dr. Key’s research. This child is doing well thanks to many donations and the kindness of people who have helped to make things happen.” The family is still in need of financial assistance and phone cards. For more information, contact Horinbein at 792-8947.
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