USA Today Episodes Around April 26, 2021
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3:02Now PlayingGene therapy: Young child gets treatment for Sandhoff disease
Apr 26, 2021·6.2K views
April 26, 2021
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3:02Now PlayingAlissa Feldborg is 16 months old and is undergoing gene therapy for Sandhoff disease, a very rare, fatal genetic disorder.
Thomas Feldborg and Daria Rokina set off nearly every afternoon to explore this city. They leave from their hotel in the Charlestown neighborhood, pushing their baby carriage, some days heading deep into downtown, others choosing a path along the Charles River.
Every few minutes, Rokina stops to peek inside and check on 16-month-old Alissa. She gently rubs Alissa's cheek and coos a few soothing words, making sure the little girl is warm enough in her yellow snowsuit and adjusting her sparkly unicorn earmuffs.
Alissa rests better in the outside air. The daily walks allow the couple to relieve some of the stress of not knowing whether their daughter will survive – and if so, in what condition.
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