JONESBORO, AR (KAIT) – As Tucker Ward walked toward the finish line in his 25-meter walk competition at the Special Olympics, it was a special moment for his family. Tucker took home the gold, but that's not what made Bryon and Ashley Ward try to soak up the moment. It was the fact that the illness that is wreaking havoc on Tucker's body, could soon take away his smile, personality, and the motor skills he has left.
Tucker was born in October of 2007, seemingly a "normal" child as the Ward's described him. "When we finally got him home everything was kind of going to plan as far as development and that kind of thing," said Bryon. Tucker seemed to progress normally, starting to speak short-syllable words and phrases, but then something happened. "We noticed he stopped doing that," Bryon said of Tucker's ability to speak.
Concerned about a delay in Tucker's development, the Wards took him to one specialist after another trying to find what was wrong, "Nobody knew what was going," said Bryon, "From Memphis to Jonesboro to Oklahoma City, I can't even tell you how many doctors we've seen."
Tucker went from one doctor to the next, receiving various answers, all the while thinking it was something that would eventually work itself out. That was all before they received the diagnosis that would change their lives forever. Tucker was diagnosed with Sanfilippo Syndrome, a rare lysosomal disorder that without a cure is terminal. "It just brought us to our knees," said Bryon, "Up until that point we had hope that this would all just be a passing thing."
The doctor delivering Tucker's diagnosis was Dr. G. Bradley Shaefer, Chief of Genetics at UAMS. Shaefer is a 30-year veteran in Genetics and said Sanfilippo is highly, "It's very rare," said Shaefer, "Children with this condition usually only live until their early to late teens." Shaefer said the type of disorder that Tucker has is a branch of Mucopolysaccharide Disease that has no current cure, known as MPS III or Sanfilippo Syndrome.
The next step for helping Tucker is to get him into a clinical trial. Shaefer said that some forms of the disease have worked with Enzyme replacement therapy, but the type Tucker has does not respond to that particular treatment. So, Tucker and several other children around the country are working to raise money for a clinical trial that is more centered around gene therapy, but it isn't going to be cheap. "For a clinical trial like this, it can cost the family anywhere between $400,000 to $500,000 a year," said Shaefer.
The race is on, a race to raise money for Tucker and other children across the nation, a race that is life and death, a race to help a family in need. "It's tough, it's really tough, but we will make it through it," Ashley said with tears in her eyes, "But we will make it through it. We are just ordinary people with an extraordinary little boy."
The battle to save Tucker has been coined "Operation Tucker Freedom". You can become a member of Tucker's troop by visiting operationtuckerfreedom.com. You can also read more information on Sanfilippo syndrome on that website.
The Ward's wanted everyone to know of the hard work and caring that Dr. Amy Bailey, APN Amy Duch, and Dr. Shaefer have given to Tucker's care. They also wanted to remind everyone that May 15 is National MPS Awareness Day. Sanfilippo Syndrome is a form of MPS.