BRILLIANT-"This is beautiful. Look at how happy she is," babysitter Susy Millard of Brilliant remarked. "It's hard to believe she was one sick little girl last week."
"She" is 4-year-old Emma McHugh, darting to and fro and giggling as she checks out her new "Dora the Explorer" bedroom.
Emma, who suffers from Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis, is the latest recipient of A Special Wish Foundation, the third largest wish granting organization in the United States. Diagnosed at 6 months of age, Emma's current treatment consists mainly of dietary restrictions and medications for high blood pressure, slow growth and iron and calcium deficiencies while the family waits for a kidney donor. Two weeks ago a kidney infection and accompanying fever and dehydration sent her to Trinity Hospital in Steubenville. The chronic, progressive disease leads to enlarged kidneys, abnormal liver functions, defective cell functions and eventual kidney failure.
EMMA MCHUGH, center, age 4, takes a first look at her new bedroom with Dr. John Mattox of A Special Wish Foundation as her brother Ethan, 8, looks on.
A family acquaintance told Dr. John Mattox, president of the Ohio Valley Chapter and the Board of Governors for A Special Wish, about Emma, and the family decided on a wish for renovating her bedroom. Mattox contacted contractor Gary Helms, owner of Gary Helms Home Improvement, who stepped right up for the project. Helms' crew, his wife, her sisters and niece gutted the room on Monday and worked 7:30 a.m. to 3:30 p.m. for four days at the McHugh house. Helms built the furniture for the bedroom at his home in the evenings. All of the labor and most of the materials were donated.
The result, unveiled Friday, was a little girl's purple and pink dream room with a trundle bed, vanity set, dresser, table and chair set, new closet, television and a "Dora" doll to share it all.
"What they've done for us is amazing," said Scott McHugh, Emma's father. "When they asked what we would like I just said maybe repaint the room. Gary Helms came up with all of the other things, and he did everything he said he would." Some of those other things included new wiring, new windows and new doors installed by Helms, Tim Reynolds, Scott Wallace and Rob Galbreath.
Kathy Helms, wife of Gary, involved other family members in the McHugh project: her sisters Penny Porter and Sharon Baugh and niece Hannah Applegarth. "This is something we've watched other people do and that we wanted to do. We feel so fortunate to have healthy children in our family." Her crew picked up materials and decorated the bedroom in the "Dora" motif. She adds that this was the first project of its kind for the Helms', but they will be ready to volunteer on future projects for A Special Wish.
The foundation began in Columbus, Ohio in 1982 and has expanded throughout the country. The Ohio Valley chapter covers 11 counties in Ohio and West Virginia from New Martinsville to Steubenville. Mattox says that they average about 20 wishes per year, though in 2010 they granted 26. Families with infants through 20 year olds with life-threatening illnesses are eligible for wishes in three categories. "A Special Gift" gives children computers, televisions, video games or pets to help distract them from pain and fear. "A Special Place" sends the child and family on a vacation or to see relatives and friends and create happy memories. "A Special Hero" arranges for the child to meet a celebrity of the child's choosing from sports, entertainment or politics. Most of the wishes have an estimated value of $3,500 to $5,000, and Mattox noted, "we never say no" to eligible families.
A 501 (c )3 charitable organization, A Special Wish (www.spwish.org) depends solely on donations and fundraisers, and 95 percent of those involved as organization trustees and board members are volunteers. The local board includes Mattox, Larry Bandy of Wheeling, John Dominic of Smithfield, Steve Fortunato of St. Clairsville and Nancy Toto of Morristown. Additional volunteers are contacted as needed depending on the project.
Mattox adds that the foundation tries to include other members of the family in the wish as well. In this case, A Special Wish presented Emma's brother Ethan, eight years old, with a gift card of his own. Dad Scott says that Ethan has been a big help during Emma's illness, and was almost as excited as Emma to explore the transformed space at the reveal. Ethan plans to purchase a toy for Emma with a portion of his gift card.
The McHugh family-Scott, Wendy, Emma and Ethan-expressed their thanks and appreciation to Dr. Mattox, A Special Wish Foundation, Gary Helms and the local businesses who participated. Donations and materials for the McHugh project came from Gary Helms Home Improvement, 84 Lumber Company, Elason Windows, Mastic Siding Company, Sherwin Williams, Mack's Drywall, Max Construction, Hoagie's Heroes Motorcycle Club, Lowe's, Sam's Club and Walmart.
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