Aleteia

This family longs to hear the words, “Little girl, your sight has been restored”

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They’ve traveled half way across the world seeking healing and help

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To watch 5-year-old Pearl Feng skip around the Ronald McDonald house, the residence in which she’s temporarily living near the Johns Hopkins University Hospital, you would never know she just came through her third eye surgery in six months. Half way across the world from her home in China, where her mother and twin sister Crystal are waiting, Pearl and her father are in Baltimore to seek the help of top specialists who may be able to restore the little girl’s sight.

Pearl has a rare hereditary condition called Familial Exudative Vitreoreptinopathy (FEVR), which affects the retina and can cause progressive loss of vision. After many tests and procedures in China, Pearl’s parents — an older Chinese couple named Chen and Anna — were left with little hope — but they refused to give up. Their devotion to Pearl and Crystal was apparent from the day they brought the little girls home from an orphanage in 2012.

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Chen and his wife are an unusual couple in China. After retiring, they adopted five month-old twins. Although married Chinese couples are allowed to give birth to two children now — the Communist Party’s 40-year-long one-child policy changed on January 1, 2016 — tens of thousands of children, many of whom are disabled in some way, are abandoned and brought to orphanages. Although it is slowly becoming more culturally acceptable to adopt in China, it remains uncommon. But Chen and Anna always loved children and were involved in charity work for years. Family is everything to them. “The warmth and love of a family is omnipresent, lasting, and engraved in our hearts,” Chen says, grasping for the right words in English. “The love of a family gives us endless energy and supports our growth as human beings.”

Although Chen and Anna have no religious affiliation, through the adoption of their daughters they became connected to Christians — many in the United States. Chen says the support and assistance of these new friends has been invaluable and inspiring to them  — especially after discovering Pearl and Crystal have FEVR (Pearl’s is much more serious than her sister’s). These relationships have helped the family along the difficult journey to find help for their daughters.

After visiting reputable hospitals in Shanghai, Chen consulted with several hospitals in Hong Kong and the United States. Then, in February 2016, the entire family flew to the United States and an ophthalmologist from the Johns Hopkins University School of Medicine examined Pearl and Crystal. Pearl was confirmed to be suffering from FEVR and required immediate surgery.

The medical bills were piling up by that point. The couple’s retirement incomes covers just their daily expenses in Shanghai. So after exhausting their savings, Chen and Anna spent four months seeking help from family and friends, some of whom advised them to give up. But they would not be deterred. They launched a GoFundMe campaign to try and raise more funds and kept hoping and believing they could help prevent Pearl from going blind.

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On August 9, 2016, Pearl had her first operation at Johns Hopkins. It lasted nearly five hours, and due to its complicated nature, doctors performed the surgery only on Pearl’s left eye. Chen says Pearl’s recovery process was rough, but eventually her strength returned and three weeks later she regained some sight. As doctors were preparing contact lenses for her, they discovered her left eye had high intra-ocular pressure and a hematoma and she would need a second operation, which she underwent in October 2016.

Chen then brought Pearl back to the U.S. in late December for follow-up appointments, and while they were waiting for test results and recommendations, Pearl wound up needing emergency surgery on January 4, due to a hemorrhage in her left eye. Just last week she was cleared to return to Shanghai to continue her recovery and will fly back to Baltimore in April for more follow-up.

Pearl faces more complex treatments and procedures and her long term prognosis is not certain. Currently, neither she nor her twin sister can attend school in China due to the current state of their eyesight. But Chen and Anna will undoubtedly find a way forward for their daughters. Chen is looking into homeschooling cirriculum — not readily available in China — and says that he and his wife will continue to spare no effort in seeking help for Pearl, and Crystal — and hopefully, eventually, other orphanage children, too.

To follow Pearl and her family’s story, you can read more here

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