A benefit for Colton Sablich will be held Sunday, Sept. 14, at the Green Bay Distillery. Colton is the son of Elizabeth Sablich, niece of Spanish teacher Amy Stover, and her husband Dustin.
The Sablich family welcomed their son Colton into the world on November 13, 2024.
They expected a joyful start to parenthood with their healthy baby boy.
However, the child was rushed to the NICU (neonatal intensive care unit) with breathing complications.
“When Colton was born, he was rushed away to the NICU. The only thing they could tell their parents was that he had dark hair. They did not get to see him or hold him,” said Mrs. Stover.
Once Colton got settled and Mr. and Mrs. Sablich saw him, they could see his facial deformities.
“His lower jaw was short and his eyes bulged out a bit. The three soft spots on his head were fused together already. That doesn’t normally happen until several months after delivery,” the aunt explained.
The doctors at St. Vincent Hospital were unaware of the causes, but they knew Colton could not eat or breathe on his own.
At two days old, he was rushed to the American Family Children’s hospital in Madison via helicopter.
It was there that doctors delivered a diagnosis that changed their lives.
Colton was diagnosed with Marshall-Smith Syndrome, an ultra-rare genetic disorder with fewer than 60 documented cases worldwide since its discovery in 1971.
Much about the condition remains unknown, but it is characterized by advanced bone age, respiratory complications, delayed intellectual skills and is often fatal in infancy.
“There is no cure. It can only be managed with a care team of family and doctors to ensure a good quality of life,” Mrs. Stover shared.
In Colton’s first months of life, he has already endured seven surgeries and countless medical scans.
Doctors anticipate at least two more surgeries in the coming year.
After more than six months in the hospital, he was able to return home on May 20.
“There were intense training sessions that Elizabeth and Dustin had to pass in order to take him home from Madison,” said Mrs. Stover.
Despite the many challenges, Colton has proven to be a fighter, earning the admiration from both his medical team and his loved ones.
“Colton is a fighter. He is growing and developing like a normal baby; milestones are just delayed,” continued Mrs. Stover.
Just as any other 9-month-old, Colton has rolled over, grown teeth, sucked on his thumb and made noises.
“We’ve been told that he may never walk, so once he outgrows strollers, he will probably be wheelchair-bound. He could surprise us, though,” added Mrs. Stover.
He has been the center of his family’s world and has been filled with love since the day he was born.
However, for the Sablich family, the journey has been both financially and emotionally overwhelming.
Extended time away from home and work, combined with medical bills and travel expenses has taken its toll on the family.
Mrs. Sablich leaves for work at 4 to 5 a.m. and comes home around 1 or 2 p.m.
While having a baby can be difficult enough, Colton needs 24-hour care and will need so for the rest of his life.
“While they are both at work, they have been fortunate to have Elizabeth’s younger sister, Hailey, come to the house to care for him,” explained Mrs. Stover.
Both Colton’s grandmothers and Hailey have completed training lessons to care for Colton.
To help ease the burden, a benefit will be held on Sunday, September 14, at the Green Bay Distillery located at 835 Mike McCarthy Way in Ashwaubenon.
Registration begins at 11:30 a.m. with a cornhole tournament beginning at noon.
Entry is $40 per team, with 50 percent of the proceeds going to the top three finishers.
In addition to the cornhole tournament, there will be a DJ, raffles and auctions.
The Sablich family hopes the fundraiser will not only provide financial relief but also serve as a reminder of the strength found in community.
Contact Connie Sablich at (920) – 676-7094 for further information and Jake Geurts to drop off items at (920) 371-0324.
