Local group helps those afflicted with rare genetic disease

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    It took the efforts of Angel’s Hands to help 12-year-old Brigham Reneer, from Provo, smile again, and now he cannot seem to stop.

    Brigham suffers from a genetic disease called Hunter’s Syndrome, a mucopolysaccharidoses (MPS) disorder that prevents the body from properly disposing of defective or excess cells.

    The resulting buildup of cells in his body has swelled his organs, tightened his joints, destroyed his hearing, constricted his breathing and damaged him mentally.

    Those who suffer from MPS disorders rarely live to see adulthood.

    Angel’s Hands, a local organization whose goal is to help people afflicted with Hunter’s Syndrome and other MPS disorders, has helped restore some normality to Brigham’s life by giving him a hearing aid and something to smile about.

    “He lights up the room,” said Brigham’s mother, Julie Reneer. “Everybody knows and loves Brigham.”

    In October 2001, Mark Kristensen, whose son Matt suffers from Hunter’s Syndrome, started Angel’s Hands to help those afflicted with MPS disorders and their families.

    “Angel’s Hands Foundation was founded to improve the quality of life for kids with MPS,” Kristensen said.

    Angel’s Hands was originally created to raise money for cure research. However, its purpose changed when Kristensen decided that the money would be better spent taking “care of the kids that are around here today, rather than worry about the research,” he said.

    Kristensen said there are less than 10 families in Utah that suffer from MPS disorders. Angel’s Hands has brought these families together by creating an invaluable social network.

    This network is the envy of the entire country, he said.

    “It helps a lot to talk to someone who really understands our daily struggles. And (Angel’s Hands) has practical ideas to make life easier, ” said Lynette Phipps, whose son Josh also has Hunter’s Syndrome.

    Angel’s Hands helps provide hearing aids and hot tubs for the children.

    “The kids live with a lot of pain. The hot tub idea, it’s not prescribed by any doctors, but personally when Matt was a baby, he loved the hot water because it was soothing,” Kristensen said.

    “The conversations, the time that I have with my son in there – that’s the neatest part about the hot tubs,” he said.

    Despite Utah’s excellent medical facilities, those who suffer from MPS disorders still must travel around the country to see specific specialists and Angel’s Hands helps pay for these trips, Kristensen said.

    Angel’s Hands was named because those who have MPS are so often referred to as angels and, because their hands begin to curl in at a young age, which often leads to the diagnoses, he said.

    There will be a 5K run/walk at the West Jordan Soccer Complex on Aug. 24th to benefit the Angel’s Hands Foundation. Check-in begins at 8 a.m. and refreshments will be provided.

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