Editor, County Press
Matthew McGuill died of complications from Prader-Willi syndrome just days before his 15th birthday in 1982.
“June 23 is his birthday and a perfect time to bring attention and awareness to this disease,” said JoBeth Whitlow, RN, and Matthew’s sister.
The Joe D. and Margaret McGuill Family is raising awareness and striving to assist with continued research for Prader-Willi syndrome. On June 23, the first Matthew McGuill Memorial Walk will begin at 8 a.m. at King’s Park.
The walk will proceed down Commerce Street to St. James Catholic Church and turn south on Osage Street back to King’s Park. Participation in the walk will not require fees or donations.
Whitlow says she believes thousands of children born with the syndrome continue to be misdiagnosed.
Prader-Willi syndrome (PWS) is the most common genetic cause of life-threatening obesity in children. Although the cause is complex, it results from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races.
Prevalence estimates range from 1 in 8,000 to 1 in 25,000 with the most likely figure being 1 in 15,000.
PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity.
Constant supervision is necessary to control the food compulsion. The drive to consume food lasts throughout the victim’s lifetime.
“When Matthew was born, so little was known about PWS,” Whitlow said. “There was no support and nobody knew what to do so doctors told Mother it was her fault that he ate too much. She lived with that guilt for a long time.”
Yet, in death, as in life, Matthew changed people’s lives for the better.
Scheduled to be released from John Sealy Hospital in Galveston where he was hospitalized, Matthew’s heart stopped beating. By then, he weighed in excess of 400 pounds and suffered from congestive heart failure.
“Just hours after his death, they called Mom and asked if they could do an autopsy,” Whitlow said. “I can’t imagine the strength it took for her to say yes.”
The McGuills’ willingness to allow doctors to examine and study the syndrome through Matthew changed the way Prader-Willi is treated today.
“Mom told them to study every tissue so that his death would not be in vain and they found out so many things through Matthew,” Whitlow said.
They also discovered that many who suffer from PWS are not profoundly retarded.
“Matthew was smart and kind and caring,” so Whitlow said.
After school, Matthew often visited shut-ins, and called senior friends. But his peers made life difficult.
“He used to ask me why the kids didn’t like him,” Whitlow said.
Coupled with the sadness was also joy.
“Matthew loved the Bobcats and he knew every player’s stats,” Whitlow said.
During the 1981 football season, the coach allowed him to sit on the bench with the team.
“I bawled the whole night because I knew he was in heaven sitting there with them,” Whitlow said.
More research, education and awareness are urgently needed.
“Come and join the McGuill family in honoring Matthew and his life while spreading the word about PWS,” Whitlow said.
T-shirts will be available for $10. Donations for the Matthew McGuill Memorial Walk to support the Prader-Willi Syndrome Association will be accepted at the event or may be made online at www.firstgiving.com/fundraiser/matthewmcguill/.