An­nual event to raise funds, aware­ness about rare ge­netic disor­der

An­nual event to raise funds, aware­ness about rare ge­netic disor­der

Maryland Independent - - Front Page - By SARA NEW­MAN snew­man@somd­news.com Twitter: @in­dy_­com­mu­nity

Many peo­ple strug­gle with healthy eat­ing and the de­sire to lose a few pounds, but for those with a rare ge­netic disor­der called Prader-Willi syn­drome, the de­sire to eat is over­whelm­ing — and the feel­ing of star­va­tion is con­stant.

One fam­ily aims to spread aware­ness of the syn­drome in South­ern Mary­land through a fundraiser at Re­gency Fur­ni­ture Sta­dium dur­ing the Aug. 27 Blue Crabs base­ball game. The Tay­lors of King Ge­orge, Va., with the sup­port of their em­ployer FGS, LLC — a se­cure in­for­ma­tion sys­tems com­pany in La Plata — hope to raise funds and aware­ness for Prader-Willi re­search.

Ad­di­son Tay­lor, 6, was di­ag­nosed with Prader-Willi syn­drome soon af­ter she was born. Her mother Michelle, fa­ther Cur­tis and brother Dar­ryn, 13, de­cided they were go­ing to blaze into their “new nor­mal” ac­cept­ing that Ad­di­son’s di­ag­no­sis didn’t change who she was.

“Our big­gest fear with Dar­ryn was that he would get the flu or a cold,” Michelle said of her dif­fer­ent ex­pe­ri­ence rais­ing her son from her daugh­ter. “[But] no mat­ter what Ad­di­son was born with, she was our child and that was that.”

Prader-Willi syn­drome, or PWS, is a rare, com­plex ge­netic disor­der that re­sults in low mus­cle tone, cog­ni­tive dis­abil­i­ties and a never-end­ing feel­ing of hunger that can re­sult in 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 syn­drome in­volves three stages that oc­cur through­out a per­son’s life­time. There is 1A — failure to thrive and 1B, where the child con­tin­ues to grow and has a nor­mal ap­petite. The sec­ond stage in­cludes 2A where a child will have a reg­u­lar ap­petite and doesn’t have an over-in­ter­est in food or anx­i­ety about it; but in 2B, the child will start to de­velop an over-in­ter­est in food and grow anx­ious over it. That’s where Michelle says Ad­di­son is now.

“We deal with, on a daily ba­sis, ex­treme food anx­i­ety. When she wakes up it’s ‘When am I gonna eat break­fast? What am I hav­ing for break­fast?’ and she’ll ask me what we’re hav­ing for din­ner two nights from now and if I change that it’s a melt­down but it’s not a melt­down that she can con­trol,” Michelle said, adding that Ad­di­son is on a strict eat­ing sched­ule through­out the day that her body has be­come ac­cus­tomed to. “Food is con­stantly on her mind, it’s all con­sum­ing.”

The third phase is char­ac­ter­ized by an in­sa­tiable ap­petite that makes it nec­es­sary for fam­i­lies to pad­lock re­frig­er­a­tors and trash cans in an at­tempt to keep PWS suf­fer­ers from overeat­ing. The Tay­lors say Ad­di­son will likely en­ter this phase be­tween the ages of 8 and 10, and they are pre­par­ing for it now.

“Can you imag­ine feel­ing starv­ing all the time? That’s what it will be like for her,” Michelle said. “We can’t stop the in­sa­tiable ap­petite but our hope is as she en­ters that stage 3 she will know what is not good for her ‘spe­cial tummy.’”

The Tay­lors have told Ad­di­son about her “spe­cial tummy” all her life and she un­der­stands she should not have cer­tain foods. Chips, cook­ies and junk food are not kept in the house, which has made the rest of the fam­ily’s diet health­ier. Ad­di­son’s diet in par­tic­u­lar is kept as raw and or­ganic as pos­si­ble.

The temptation to eat — and to eat un­healthy foods — is ev­ery­where out­side the home and Michelle said in­form­ing teach­ers, ad­min­is­tra­tors, friends and other par­ents of Ad­di­son’s di­ag­no­sis is dif­fi­cult but nec­es­sary. Cup­cakes for a class­mate’s birth­day are not al­lowed, nor is candy at birth­day par­ties.

“In a world we live in where food equals love and food equals so­cial gath­er­ings and holidays and birth­days... we grew up feast­ing and lov­ing it, but we re­ally have had to al­most elim­i­nate all of that be­cause food is not love for Ad­di­son,” Michelle said.

Michelle said she has al­ready seen proof of Ad­di­son’s un­der­stand­ing about her “spe­cial tummy,” when she’s de­nied candy from a friendly stranger or told her par­ents about treats mis­tak­enly put in her back­pack at school, which gives Michelle and Cur­tis hope for an un­known fu­ture.

“The best thing we can do is teach her now so she will be pre­pared... We can’t cure her or take [PWS] away, but we can give her the best qual­ity of life we can,” Michelle said.

Ad­di­son is in­volved in oc­cu­pa­tional, phys­i­cal, speech and hip­pother­apy and she trav­els to Florida twice a year to see a spe­cial­ist. Be­cause of early in­ter­ven­tion and the care she has re­ceived from both doc­tors and her par­ents, Ad­di­son is do­ing well.

“Ad­di­son is such a lovable and creative lit­tle girl. She loves to color, paint, sing, dance. She is just a joy to be around. She’s a joy, a bless­ing and a mir­a­cle,” Michelle said.

The One Small Step/Paint the Park Blue event will ben­e­fit the Foun­da­tion for Prader-Willi Re­search, and Michelle said 100 per­cent of the funds raised will go to­wards re­search.

All ticket sales pur­chased with the code FPWR for the Aug. 27 game will do­nate $6.50 to the foun­da­tion. Sup­port will be seen through­out the sta­dium through the cel­e­bra­tory lap around the ball field to the bal­loon re­lease, a silent auc­tion and op­por­tu­ni­ties to learn about PWS around the con­course.

“We wanted to pull in the gen­eral pub­lic, fundraise and have fun so the base­ball game seemed like a home run to us,” Michelle said. “Last year so many peo­ple stopped to ask me about Prader-Willi and that gave us a sense of sat­is­fac­tion that we were do­ing what we could to in­form peo­ple about this.”

For more in­for­ma­tion about the event, go to ones­mall­step.fpwr.org/ dw/walk­ing/lo­ca­tion/1814.

SUB­MIT­TED PHO­TOS

Ad­di­son Tay­lor, 6, is pic­tured with her “cake” made up of fruit on her sixth birth­day. Ad­di­son’s fam­ily, along with FGS, LLC, will host an event to raise funds and aware­ness for Prader-Willi Syn­drome re­search in Au­gust.

Ad­di­son Tay­lor, 6, was di­ag­nosed with Prader-Willi syn­drome soon af­ter she was born. It is a rare, com­plex ge­netic disor­der that re­sults in low mus­cle tone, cog­ni­tive dis­abil­i­ties and a never-end­ing de­sire for food.

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