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operation tucker freedom
Story by Shaila Creekmore, Photo by Katie Asbell-Stamps

When Bryon and Ashley Ward brought their infant son, Tucker, home seven years ago, there was no sign that their newborn baby had a rare and fatal disease.

Born on Oct. 11, 2007, Tucker’s life had a normal beginning and the Wards were excited to begin their family with a son. Within his first year of life, however, there were signs that Tucker was not progressing as he should.

At 10 months old, the Wards noticed Tucker was no longer turning his head when they entered the room and was not tracking their voices. A visit to the doctor’s office assured the couple that everything was normal and that surgery to insert tubes into Tucker’s ear would quickly solve the problem.

But Tucker’s health issues continued. He missed important milestones in his development and eventually began to lose some of the skills and functions he did have. Doctors began giving diagnoses like cerebral palsy and autism.

“It was a process of elimination,” said Bryon. “His symptoms didn’t match anything for the longest time. The autism diagnosis at least allowed us to qualify for therapies and begin occupational and physical therapies.”

With little else to go on, the Wards were four years into their search for answers when Amy Duch, A.P.N., referred Tucker to the genetics clinic at Arkansas Children’s Hospital. The first set of tests came back clear, but a second round of more invasive testing revealed Tucker had Sanfilippo Syndrome Type A.

Sanfilippo Syndrome is a genetic lysosomal storage disorder in which the body is unable to properly break down long chains of sugar molecules that help form the architectural framework of the body. Because children like Tucker are either missing or have a defective enzyme needed to break down these chains, the sugar molecules remain stored in cells inside the body causing the brain and central nervous system to be progressively destroyed.

Dr. Bradley Schaefer, head of the genetics clinic, explained to Bryon and Ashley that Tucker’s condition was the most severe form of Sanfilippo, non-treatable and eventually fatal. They were told that their then 5-year-old would eventually be wheelchair bound and food tube dependent, that his mental capacity would continue to decline and that he would never live to adulthood.

“He doesn’t sleep at night. Aspiration while he’s eating is something we have to watch. Every meal has to be fed to him,” said Ashley. “He’s pretty much total care now.”

In addition to the news about Tucker, the Wards were told their 1-year-old daughter, Malley, could also have the genetic condition. There was a one in four chance that each of their children would be born with Sanfilippo. For nearly two months, the couple waited to see if their vibrant, energetic toddler would
also have the same condition.

“Had we known that it was Sanfilippo, we maybe would not have had a second child, but we didn’t know at the time that what was wrong with Tucker could also have happened to Malley,” said Bryon.

Malley’s results came back normal and she is now a healthy, active 2-year-old.
In most cases of Sanfilippo, families are told to take their children home, keep them comfortable and enjoy their children while they have them, but for the Wards, that was not enough. Bryon and Ashley, both with careers in the medical field, wanted to try to help find a treatment for Tucker and other children with Sanfilippo.

The Wards learned of a research team at Nationwide Children’s Hospital in
Columbus, Ohio, that had partnered with Abeona Therapeutics Inc. to
develop ABX-A and ABX-B, potential cures for Sanfilippo Type A and Type
B diseases. Abeona is now working to complete pre-clinical development
and to advance the treatments to clinic trials in 2015, both of which
require funding.

From the limited information released about the research, the Wards are
hopeful the trials prove as effective as the animal trials, which not only showed a reversal of the enzyme deficiency, but also a restored cognitive function.

“We are hoping the medicine will improve his quality of life,” said Bryon. “Children with Sanfilippo typically live seven years to early teens. With Tucker turning seven … it kind of put us in panic mode – that’s why we are pushing for this trial.” Friends and family of the Wards expressed their desire to help the family raise funds to donate to Abeona Therapeutics and toward the clinical trial.

“They came to us and said, ‘We just want y’alls permission to do it. We will do all the work,’” said Bryon. “When people do stuff like that, you’re kind of blown away by the innate goodness of people.” Other families across the country had started foundations to support Abeona’s work so the support group decided to create a 501(c)3 nonprofit organization called Operation Tucker Freedom
in which to raise funds. All of the funds raised through the charity are given directly to Abeona Therapeutics to fund research and the drug trial approval by the Food and Drug Administration.

Members of Operation Tucker Freedom’s board are Bryon, who serves as president; Duch, vice president; Tabatha Edwards, secretary; Rhonda Baugh, treasurer; and Lana Matthews, technology director. The board first began by raising awareness of Sanfilippo Syndrome across Northeast Arkansas, accepting
donations and selling T-shirts with Tucker’s picture on the back. To date, nearly 450 T-shirts have been sold and along with donations, Operation Tucker Freedom has raised just short of $20,000. Baugh, a former co-worker of Ashley’s, said she along with other friends felt they could do something to help support the family while also raising funds for medical research to help Tucker.

“We told them, we want to do this. We just feel in our hearts we need to do this,” said Baugh. “It’s been a lot of work, but he is so precious and that smile just steals your heart. If we save one life, it’s been worth it – even if it’s not Tucker – if we help save another child, it’s totally worth it.”

With Tucker’s seventh birthday approaching, a Tucker Freedom volunteer and friend, Stacey Sloas, came up with the idea to have a fundraiser on his birthday. The board and other volunteers took the idea and ran with it, quickly growing it from a birthday party to an all-day event called Tuckerfest.

The event will be held at Arkansas State University’s Tailgate City on Tucker’s birthday, Oct. 11, from 9 a.m. until 9 p.m. The day’s activities will include arts and crafts vendors, activities for children, food vendors and music by eight bands performing throughout the day with American Idol Star Lauren Gray headlining the event.

Baugh, chairperson for the event, said the community has been extremely
generous in its support of Tuckerfest. Operation Tucker Freedom volunteer,
Richard Dust, is donating the stage and a crew to run the stage from his business, Platforms Plus. Insurance agent Woody Harrelson of The Bob Nichols Agency donated an insurance policy to cover the event and also helped get approval from the ASU Athletic Department to use Tailgate City.

For children attending the event, various games will be available under the Tailgate City tents from 10 a.m. until 2 p.m. Grandslam Entertainment will provide bounce houses and slides.

From 9 a.m. until 4 p.m., craft vendors will be set up on the east side of Tailgate City. Each vendor booth is available for a $50 fee that will go toward Operation Tucker Freedom.

Food vendors for the event will be Scott Baney of Fox’s Pizza Den who will offer pizza, cookies, nachos, cotton candy and snow cones; and Danny Hathcoat of Danny’s Barbecue will have barbecued bologna sandwiches. Various banks are donating grills to cook hotdogs and hamburgers.

“Much of the food has been donated to allow for as much profit as possible,” said Baugh. The eight bands performing are also donating their time to perform along with emcees Bill Pressly and Blake Guinn. The music lineup is: 10:00-10:50 a.m. James Michael McCloud, 11:15 a.m.-12:10 p.m. Zach Williams and the Brothers of Grace, 12:35- 1:30 p.m. Sky City, 1:55-2:50 p.m. Guitars and Cadillacs, 3:15- 4:05 p.m. Jake Lung Band, 4:30-5:30 p.m. Robbie Rigsbee and Michael Collins from Further Down, 6:00-7:00 p.m. 80HD, and 7:30-8:30 p.m. Lauren Gray.

Admission to Tuckerfest is $5 and all proceeds go directly to Operation Tucker Freedom. Organizers are asking guests to park at the ASU Convocation Center at Centennial Bank Stadium on the south end near First Care and enter on the east side. For more information, visit operationtuckerfreedom.com or
e-mail Baugh at r_baugh@hotmail.com.