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Utah families grapple with rare disease, hope for progress

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  • Rustymommy Clovis, NM
    July 23, 2013 9:40 p.m.

    Thank you for the dedication of good parents, both moms and dads. This is a thankless job and two good parents make the job just a little easier. This young man is one lucky boy to have family support.

  • Tennor Orem, UT
    July 22, 2013 10:34 a.m.

    Thank you to the doctor who said, "A child should not suffer just because their condition is rare, so to see that it's made a difference and to receive that recognition really means a lot to me."
    I'm grateful to doctors who study rare diseases and help just the few.

    And I'm glad they have used the internet to offer support to one another. It's so important!

    My daughter has a rare disease (1 per million) called XP. You can find more about it by searching Anna Liberty XP.

  • RShackleford Saint George, UT
    July 22, 2013 9:25 a.m.

    Sometimes the greatest Hero, is a good Mom. Much respect for this mother and those parents like her.