Fam­ily ad­vo­cates for daugh­ter with rare ge­netic dis­ease

Maryland Independent - - Celebrations -

The fam­ily of Ad­di­son Tay­lor, a 7-year-old di­ag­nosed with a rare ge­netic dis­or­der called Prader-Willi syn­drome, along with their em­ployer, FGS, LLC of La Plata, will host their an­nual One Small Step/Paint the Park Blue for PWS fundraiser for Prader-Willi re­search Satur­day, Aug. 12 at Re­gency Fur­ni­ture Sta­dium.

The Tay­lors — in­clud­ing mother Michelle, fa­ther Cur­tis and brother Dar­ryn, 14, of King Ge­orge, Va. — elim­i­nate junk food from their house as much as pos­si­ble in or­der to keep Ad­di­son’s food temp­ta­tions at bay. The com­plex dis­or­der’s key trait is an over­whelm­ing de­sire to eat to sa­ti­ate an in­sa­tiable ap­petite. Along with caus­ing low mus­cle tone and cog­ni­tive dis­abil­i­ties, the re­sults can lead to chronic overeat­ing and life-threat­en­ing obe­sity. Ac­cord­ing to the Prader-Willi Syn­drome As­so­ci­a­tion, it is thought that one in 12,000 to 15,000 peo­ple world­wide has the syn­drome.

The fam­ily hopes the fundraiser will in­crease pub­lic knowl­edge of the dis­ease as well as raise funds for its cure. Be­fore the Southern Mary­land Blue Crabs game ver­sus the Long Is­land Ducks be­gins, fam­i­lies of in­di­vid­u­als with Prader-Willi syn­drome will walk the field around 6 p.m. as an in­for­ma­tional video plays on the field.

Ad­die will throw the first pitch of the game. In­for­ma­tional ta­bles will be set up on the con­course through­out the game with in­for­ma­tion about Prader-Willi syn­drome. One hun­dred per­cent of do­na­tions will go di­rectly to re­search through the Foun­da­tion of Prader-Willi Re­search.

SUB­MIT­TED PHOTO

Ad­di­son Tay­lor, 7, was di­ag­nosed with a rare ge­netic dis­or­der called Prader-Willi syn­drome soon af­ter she was born. Her fam­ily and their em­ployer, FGS, LLC hosts an an­nual fundraiser for Prader-Willi re­search at Re­gency Fur­ni­ture Sta­dium to spread aware­ness and raise funds for the dis­ease.

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