'Tis indeed the season. But for many children it's not all about sugar plums dancing and Santa's sleigh bells a ringin'.
Sebastian Price is the 4-year-old son of Jon and Pearl Price of Salem. Sebastian suffers from cerebral palsy. Born four months premature, Sebastian is also blind. Oxygen deprivation resulted in serious brain damage. He has diabetes insipidus and a shunt running from head-to-belly. He has had hip and bowel surgeries. He has other internal issues. He is wheelchair-bound.
Columbiana County Sheriff's Deputy Jon Price is shown with his wife, Pearl, and son, Sebastian. The 4-year-old suffers from cerebral palsy and other challenges. His frequent visits to the Akron Children's Hospital inspired Price to begin a toy drive for children at the hospital who may be lacking in family presence and support. (Salem News photo by J.D. Creer)
"He is such a happy boy," said his father, a member of the Columbiana County Sheriff's Office. "He is a very happy boy."
Sebastian has had so many trips to the Akron Children's Hospital that his parents could have their mail forwarded there. Let's just say they know their way around the place. "We were there non-stop for his first two years," Jon said.
There have been three life flights. One came during this past year. There have been 17 surgeries. The most recent put Sebastian in a cast from his chest to his ankles. Yeah, right, the next time you are having a bad day re-read all of this again.
Thirty-year-old Jon has been a deputy with the Sheriff's Office since 2010. He is also a Special Weapons and Tactics (SWAT) team member. Talk about stress on-and-off the job. Previously the Austintown Fitch High School graduate worked law enforcement for the Mahoning County Sheriff's Office and in Windham. Pearl hails from Tanzania, Africa. The Prices have a daughter, healthy 7-year-old Jasmine. She is a Buckeye Elementary School first-grader. They are expecting a third child next month.
Life was brutal from the get-go for Sebastian. After carrying her son for four months, Pearl's water suddenly broke. Fluid loss was substantial.
"Sebastian was vacuum- sealed in his own placenta," Jon said. "They had difficulty getting him out. He looked like a little rubber doll."
More precisely, like a 2-pound, 11-ounce little rubber doll.
There was profound oxygen deprivation. "The blood vessels in his brain burst," Jon recalled. Half of his brain is dead. There are condition grades with grade 4 being the worst. One side of his brain is grade 3 and the other grade 4.
Regarding his sight, in layman's terms, Sebastian's eyeballs are fine. The connections with the eyes just aren't there.
He doesn't have the trunk support for walking.
Cerebral palsy is an umbrella term. It involves non-progressive and non-contagious motor conditions that result in physical disability in development, primarily in body movement. "It's confusing how cerebral palsy works," Jon said.
When Sebastian first arrived at Akron Children's Hospital, his parents became regulars at a nearby Ronald McDonald House. Staying so often in Akron - and seeing the plights of so many precious children left the Prices awe-struck. Heartbroken too. That prompted Jon to begin a toy drive, providing Christmas gifts to needy children at the hospital.
"For whatever reason, there are a lot of times that we see kids all alone," Jon said. "It's pretty sad. I see them looking out from across the hall or from the next bed over. Many are on ventilators."
Certainly nothing to prompt a Christmas spirit. But the Prices do their best. A self-initiated toy drive is in its fourth year. They are accepting unwrapped gifts at two collection points: the Sheriff's Office located on Market Street in the courthouse in downtown Lisbon; and, the Sheriff's Office main office located at 8473 County Home Road. Toys may also be brought to the editor's office at the Salem News. They will be accepted through Dec. 17. The following day the toys will be transported for distribution at the Akron Children's Hospital. New toys are preferred, boys or girls. Doesn't matter. Gently-used toys are accepted, too. Just use common sense with that. For some children, these toys could be the only ones they get on Christmas.
"The Sheriff (Ray Stone) graciously lets me take the prisoner transport van," said Jon, who praised Sheriff's Office clerk Jen Tucker for her assistance with the toy drive.
Now four-plus years after the most difficult of arrivals into this world, Sebastian endures countless therapy sessions. Home visits from nurses and therapists occur on a daily basis. There has been some improvement which begats hope. After such giant challenges, the Prices appreciate even the littlest of successes.
"If you would've seen him before his therapies he was unable to hold his head up," Jon said. "He explores with his hands. He likes tapping on a little keyboard. There are things that most people wouldn't appreciate because they don't understand. We do. The little things you don't take for granted. Our daughter is very protective of him, too. Special needs affects everything and the people around you.
"I do think it's good that when he was born, he was born blind instead of losing his sight. He doesn't know any better. For him this is normal."
There have been close-to-death calls. "They actually, on two times, called us in the back room and said that we might want to let him go," Jon said.
But Sebastian hasn't gone anywhere.
"He's a fighter and has come a long way," beamed his dad. "He taught me a lot of things. Like how to appreciate life and to realize how fragile life is."
During a season of "ho, ho, hos," the Prices don't cry out "why, why, why?" Spare them any pity parties.
"It was all God's plan," said an upbeat Jon. "I think He does things for a reason. He doesn't give anything that can't be handled. We do try to take it a day at a time. Sebastian won't be able to go off on his own. He is going to be with us. When we go up to his medical bed, he hears us and reaches out to touch us, to touch our faces."
Actually, in his short life Sebastian has touched more people than he will ever know.
"He's been our inspiration," echoed his parents.