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Ohio Fact Sheet

When Raynea’s son, Bryant, was 2.5 years old, his pediatrician expressed concern that something was very wrong. Bryant was referred to the children’s hospital, where an MRI and genetic testing revealed terrible news: Bryant had MLD.

After getting the diagnosis, Bryant’s condition deteriorated rapidly. Within a week, he lost the ability to walk and eat on his own. He was too far progressed for any intervention. Raynea, like other parents of medically complex children, got an unwelcome crash course in nursing and full-time caregiving.

Bryant rapidly lost one milestone after the next. This left his family in a constant state of whiplash and no time to cope with the last loss. Within 11 months of diagnosis, he passed away. Since then, Raynea’s reality has meant trying to answer this question: “Who am I now that my baby is gone?” This also has left Bryant’s siblings to adjust to life without their beloved brother, whom they remember and talk about daily.

According to Raynea, “If NBS would have been available to Bryant at birth it would have expedited the steps needed to obtain a diagnosis.”

 

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