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Support Charlie Nova's Medical Journey

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This is Charlie Nova. At 6months old Charlie was diagnosed with Usher Syndrome Type 1B. Usher syndrome is a prominent cause of deafblindness in children worldwide. Charlie is currently 9 months old. Next week she will undergo surgery for dual cochlear implants for bilateral profound SNHL. She is also struggling with her milestones due to the vestibular issues that accompany USH1B. There are many services that she is receiving but every month is a new journey. There is equipment and transportation requirements that are becoming costly very quickly. Many of her doctors require extensive travel. There are also medical trials available to slow progression of her vision loss. Being able to attend these reasurch studies and trials may vastly improve development of treatment and give hope of vision to her and many other children struggling with an Usher Syndrome diagnosis. Our family is involving ourselves in the Usher Syndrome Community in hope to give Charlie the most fulfilled life possible. Any donation helps.
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    Medeorganisatoren (1)

    Erin Sinclair
    Organisator
    Hardwick, MA
    Tyler Sinclair
    Medeorganisator

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