• Charlotte baby dies after battling extremely rare disease

    By: Paul Boyd

    Updated:

    CHARLOTTE, N.C. - A sad update to a story Channel 9 first brought to you in June -- Nine-month-old Skylar Rodriguez has died after battling a rare disease. 

    Skylar's family contacted Channel 9 Friday morning and wanted to thank the community for all the love and support in recent months. 

    [RELATED: Newborn in Charlotte battles extremely rare disease]

    Baby Skylar was undergoing a new enzyme therapy treatment in hopes of extending her life after being diagnosed with a disease that impacts only 150 people worldwide. 

    Skylar was diagnosed with an extremely rare disease, known as MPS 7, and was only given months to live.

     

    A new breakthrough FDA-approved treatment had given her family hope.

    Channel 9 connected Skylar’s family with a company called Ultragenyx, which makes the $200,000 IV infusion.

    [RELATED: Drug company steps in to help Charlotte newborn battling rare disease]

    The company quickly followed through on its pledge to provide the enzyme therapy treatment at no cost to the family.

    Skylar's first treatment was on July 4.

    "Skylar took it very well," her grandmother said. 

    The biweekly, four-hour process helped remove toxins from her body.

    "It's actually taking a lot of the swelling away that we didn't know where the swelling was coming from," Washington said.

    Baby Skylar was allowed to stay at home and return to the hospital to see her doctors every two weeks to receive the enzyme therapy treatment.

    "We just want to see her have the ability to live a good life," Washington said.

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