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North Texas Wine Opener honors Maddie Dallas, offers baby Sloan
hope for better future
By Lyn Pry, Special to the Leader
The birth of a first child is a special event that brings with it many milestones -- a first tooth, first steps and first Mother’s Day. This year, Sunday is especially poignant for the Scott and Dallas families. Jorde and Jacqueline (JJ) Scott welcomed their daughter Sloan on Feb. 14, while Jorde lost his cousin, Madison (Maddie) Marie Therese Dallas, on Oct. 14, 2011. The common thread: both family members inherited the genetic disease cystic fibrosis (CF).
“We were aware that Jorde has the CF gene on his family’s side, but he hadn’t had any genetic testing done on himself,” JJ said.
It was in support of Maddie that Holly Scott (Jorde’s mother and Sloan’s grandmother) became a sponsor for the North Texas Wine Opener (NTWO), an established fundraiser benefiting the NE Texas Chapter of the Cystic Fibrosis Foundation (CFF). This year’s event, slated for Sunday, is dedicated in Maddie’s honor.
The idea of having a child with CF, though, never entered Jorde or JJ’s minds. “We really didn’t think that we would have a child with CF, because both parents must have the CF gene, and I don’t have anyone in my family with CF. It was unfathomable that we’d both have the CF gene,” JJ said.
According to the Cystic Fibrosis Foundation, more than 10 million Americans are symptomless carriers of the defective CF gene. At JJ’s nine-week prenatal medical appointment, she tested positive for CF.
“Once my [genetic] test came back positive, Jorde was also tested,” JJ said. “When his also came back positive, we knew there was a one-in-four chance that our baby would have CF.”
At 13 weeks, Sloan was tested and diagnosed in utero as having cystic fibrosis.
“At that time, I knew that Sloan was as healthy as she’d ever be and we used the next six months to get our family and friends ready for what would happen after she was born,” JJ said.
The Scott family’s intimate knowledge of CF better prepared them for Sloan’s future. They understood the challenges of this disease because of Maddie’s struggles with CF.
“We already knew about the CFF local chapters and clinics through the [North Texas] Wine Opener and were able to get set with CF doctors,” JJ said. “Dr. [Claude B.] Prestidge just retired as head of the CF clinic and Dr. [Carolyn L.] Cannon is a pediatric pulmonologist. When Sloan was born, and at subsequent exams with her pediatricians, Drs. Prestidge and Cannon are also involved, so they can talk together.”
JJ says baby Sloan is doing really well, but it’s been a change for her staying home with a newborn all day and limiting visitors to control Sloan’s exposure to possible illness. “That’ll be the next big challenge; her first illness.”
The Scotts are planning to have more children in the future.
“We’re lucky to live now, when we have [so many treatment] options,” JJ said. “We may not be able to have more children the ‘regular’ way, but there are other options for us to have healthy children. I would hope that everyone would be able to have the CF genetic test.”
For both families, the joy of Sloan’s arrival is tempered by Maddie’s absence.
On Oct.14, 2011, friends of the North Texas Wine Opener gathered to set fundraising efforts in motion for the 2012 event. It was on the day of that kick-off party that 14-year-old Maddie -- daughter of Drs. John and Dara Dallas, niece of Holly Scott and cousin of Jorde Scott -- lost her personal battle with CF.
While the evening’s intended purpose was accepting gifts for the Wine Opener’s live and silent auctions, it also honored the memory of a very special teenage girl, and reaffirmed the group’s desire to make the fundraiser as successful as its predecessors.
“It is because of Maddie, and now baby Sloan, that we continue our efforts,” explained event co-chair Jill Welke. “We are so close to CF standing for Cure Found, which will give Sloan, and thousands of others, the bright, limitless futures they deserve.”
The 2011 Wine Opener raised $255,000, which brought the total net amount raised to more than $1.5 million for the Foundation.
This year’s North Texas Wine Opener, “Raise for the 65 Roses,” is Saturday at Old Town Lewisville’s Royal Affairs Ballroom. The event will feature award-winning cuisine from event sponsor Morris Salerno's The Grotto restaurant in Highland Village, paired with California wine provided by Newton Vineyard.
Although 2012 Honorary Chair Kevin Harvick, driver of No. 33 NASCAR Nationwide Series Fast Fixin' Chevrolet, races in Darlington in the Sprint Cup Series on Saturday, he will present a special message to ticket holders. Harvick will also offer a one-of-a-kind NASCAR experience to the highest bidder.
The eighth annual Wine Opener volunteers and sponsors are working to raise a record amount for the CFF. In turn, the Foundation will impact lives like Sloan’s and other CF patients and their families with research and advanced therapies.
Statistics
* Cystic fibrosis is a chronic disease that affects the lungs and digestive system of about 30,000 children and adults in America; 70,000 worldwide. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs, leading to life-threatening lung infections and obstructing the pancreas which stops natural enzymes from helping the body break down and absorb food.
* The CFF devotes 90 cents of each dollar to vital research, including drug, physical and genetic studies. One such drug, KALYDECO™, is the first drug on the market that targets the underlying cause of cystic fibrosis.
* The “65 Roses” term is how younger patients pronounce their disease. It began back in 1965 when CFF volunteer Mary G. Weiss spent hours on her phone seeking research donations on behalf of her three sons, all of whom had CF. One day her four-year-old son Richard came into the room and told his Mom: "I know what you are working for." Because he didn’t even know he had cystic fibrosis, she asked him what he thought she was doing. He answered: "You’re working for 65 Roses."
* When the first medical report on CF was written in 1938, few children lived to even school age. A New York City heat wave in 1953 led physicians to connect the extra loss of salt by people with CF as the disease's underlying cellular problem. By 1962 the median survival age was 10 years old. Advances in research and medical treatment over the last 50 years has led to an expected median survival age well into the 30s, 40s and beyond.
For information on sponsorship or underwriting the event, contact Jill Welke at 214-232-3044 or go to www.facebook.com/cfwineopener or Twitter (#CFNTWO).
2929 Carlisle, #230 Dallas, TX 75204
214/871-2222 Metro: 972/263-7299 Fax: 214/969-7439 Internet: www.cff.org E-mail: ne-texas@cff.org
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