For one Statesboro teen, turning 16 marks milestone his family never thought possible
Rare genetic disorder is only found in 1 of every 100,000 people
Updated: 6:37 AM EST Jan 10, 2020
Alex Littlehales
IF YOU ARE INTERESTED..YOU CAN GO TO BRYAN- COUNTY-DOT-ORG TO APPLY. THIS WEEKEND... A STATESBORO TEENAGER CELEBRATES A MILESTONE HIS FAMILY NEVER THOUGHT THEY'D SEE. WJCL'S ALEX LITTLEHALES JOINS US LIVE... WITH STORY YOU'LL SEE ONLY ON WJCL NEWS... ALEX? THIS FAMILY SAYS THAT IT FIRST STARTED OUT AS A SMALL BIRTHDAY PARTY... JUST FOR FAMILY. BUT WHEN THEY REALIZED JUST EXACTLY WHAT THEY WERE CELEBRATING... THEY'RE ENCOURAGING THE WHOLE COMMUNITY TO COME OUT... TOO. SOME FLOUR... ... AND EGGS... ARE ALL CORA BARS NEEDS TO MAKE MAGIC. "I'VE DONE A COUPLE CAKES... FOR GAUGE'S BIRTHDAY... BUT NEVER THIS MAGNITUDE." A FORMER STATESBORO BAKER... THE CAKE SHE'S BAKING HAS TO BE JUST PERFECT. AFTER ALL... IT'S A CAKE SHE NEVER THOUGHT SHE'D BE MAKING IT'S FOR HER COUSIN... 16-YEAR- OLD GAUGE STRICKLAND. HIS OTHER COUSIN...MARION VANRYSWYK.... SAYS HE GREW UP LIKE ANY OTHER KID... "HE USED TO BE A RAMBUNCTIOUS... ANY 2 YEAR OLD, 3 YEAR OLD... UNTIL ONE DAY... DOCTORS DISCOVERED SOMETHING WRONG... "HE WAS DIAGNOSED A LITTLE UNDER 3 YEARS OLD... HE HAD MORE THAN 10 SURGERIES B THE TIME HE WAS 2. WE KNEW SOMETHING WASN'T RIGHT. "SURE ENOUGH...GENETIC TESTING... THAT'S WHAT HE HAD... HUNTER'S SYNDROME." HUNTER SYNDROME...ALSO KNOWN AS MPS... IS A GENETIC DISORDER THAT AFFECTS A PERSON'S NATURAL GROWTH. "HIS LIFE EXPECTANCY WAS 16...ACCORDING TO THE SEVERITY OF HIS DISEASE." "WE NEVER THOUGHT HE WOULD REACH THIS 16TH BIRTHDAY BUT EVERY YEAR...HE FOUGHT IT... WHILE GAUGE'S PARENTS... TEND TO HIM IN HOSPICE CARE... THE REST OF HIS FAMILY IS BUSY AT WORK... PREPARING FOR THIS MILESTONE... THEY NEVER EXPECTED... "THIS IS A CELEBRATION. HE MADE IT 16... THIS IS SOMETHING TO CELEBRATE, NOT BE SAD ABOUT. WHY WOUL WE WANT TO BE SAD AT THI MOMENT WHEN WE HAVE HIM HERE.. WHILE GAUGE'S TIME AFTER HIS BIRTHDAY REMAINS UNCLEAR... HIS FAMILY SAYS HE'S ALREADY BEATEN THE ODDS... "HE'S THAT ONE IN MILLION... THAT ONE LITTLE PIECE EVERYBODY NEEDS IN THEIR LIFE." THE BIRTHDAY CELEBRATION WILL BE THIS SATURDAY IN STATESBORO. THE FAMILY HAS COLLECTED COMMUNITY DONATIONS TO RUN A SILENT AUCTION FOR GAUGE'S MEDICAL COSTS.
In a rural Statesboro home, Cora Bars mixes eggs and flour for possibly the most important cake she's ever made.It's muscle memory for the former Statesboro bakery owner, as she whips up layers of batter for her cousin, 16-year-old Gauge Strickland."I've done a couple cakes for Gauge's birthday but never this magnitude," Bars said.For Bars, she wants this cake to be perfect because she never knew she'd even have the chance to make it in the first place.As a child, Strickland was diagnosed with mucopolysaccharidosis Type II, also known as Hunter syndrome. It's a genetic disorder that affects a person's natural growth pattern, with symptoms including stunted growth, large internal organs and other skeletal irregularities.His other cousin, Marion VanRyswyk, says he grew up like any other young child until his diagnosis changed his and his parents' lives forever."He used to be a rambunctious like any 2-year-old, 3 -year-old," VanRyswyk said. "He had more than 10 surgeries by the time he was 2."According to the Mayo Clinic, there is no cure for Hunter syndrome. The U.S. National Library of Medicine states that the life expectancy of a person with Hunter syndrome is between 10 and 20 years."His (Strickland's) life expectancy was 16, according to the severity of his disease," VanRyswyk said. "We never thought he would reach his16th birthday."While Strickland's parents take care of him in hospice care now, the rest of his family has been hard at work preparing for a birthday party to celebrate his life, a birthday they never knew would happen."This is a celebration. He made it to 16. This is something to celebrate, not be sad about. Why would we want to be sad at this moment when we have him here?" Bars said.The family has collected community items to hold a silent raffle, with the proceeds going toward medical costs.The event starts at 3 p.m. at 2171 Prather Road in Statesboro.The community is invited to attend.
SAVANNAH, Ga. (WJCL) —
In a rural Statesboro home, Cora Bars mixes eggs and flour for possibly the most important cake she's ever made.
It's muscle memory for the former Statesboro bakery owner, as she whips up layers of batter for her cousin, 16-year-old Gauge Strickland.
"I've done a couple cakes for Gauge's birthday but never this magnitude," Bars said.
For Bars, she wants this cake to be perfect because she never knew she'd even have the chance to make it in the first place.
As a child, Strickland was diagnosed with mucopolysaccharidosis Type II, also known as Hunter syndrome. It's a genetic disorder that affects a person's natural growth pattern, with symptoms including stunted growth, large internal organs and other skeletal irregularities.
His other cousin, Marion VanRyswyk, says he grew up like any other young child until his diagnosis changed his and his parents' lives forever.
"He used to be a rambunctious like any 2-year-old, 3 -year-old," VanRyswyk said. "He had more than 10 surgeries by the time he was 2."
According to the Mayo Clinic, there is no cure for Hunter syndrome. The U.S. National Library of Medicine states that the life expectancy of a person with Hunter syndrome is between 10 and 20 years.
"His (Strickland's) life expectancy was 16, according to the severity of his disease," VanRyswyk said. "We never thought he would reach his16th birthday."
While Strickland's parents take care of him in hospice care now, the rest of his family has been hard at work preparing for a birthday party to celebrate his life, a birthday they never knew would happen.
"This is a celebration. He made it to 16. This is something to celebrate, not be sad about. Why would we want to be sad at this moment when we have him here?" Bars said.
The family has collected community items to hold a silent raffle, with the proceeds going toward medical costs.
The event starts at 3 p.m. at 2171 Prather Road in Statesboro.
The community is invited to attend.