BELLOWS FALLS >> A few uncontrollable seizures a day is not a rare occurrence for a local 5-year old boy with a rare syndrome that often puts him at risk of injury.
Sebastian Bellimer, was diagnosed at three months with Sturge Weber Syndrome, which is a "congenital, non-familial disorder of unknown incidence," according to the Sturge-Weber Syndrome website. Individuals with the syndrome usually have a port-wine stain birthmark (usually on the face) and may have nervous system problems. Sebastian has experienced several different types of seizures throughout his life, the most severe being myoclonic, which causes him to forcefully fall to the ground. He also has endured grand mal seizures that occur frequently while he is asleep and are the most terrifying, according to his father, Dave Bellimer. Given the risk of Sebastian falling and hitting the floor during one of his episodes, Bellimer and his wife, Jillian Cenate, are looking to purchase a service dog from Sherlock Service Dogs.
"I can't keep him in a bubble forever," said Bellimer. "I have no idea when the seizure is going to hit him, ya know? So maybe you cocoon him all day and he doesn't have a single seizure, but you can't really tell. The service dog will be able to detect the myoclonic seizures and more."
This service dog will be trained to retrieve Sebastian's medication, assist him with balancing and to alert with a bark or by pressing a button that his ward is having a seizure. The cost of training for the dog will cost $13,500 according to his parents, and $2,500 will be donated from The Chelsea Hutchison Foundation, which "exists to raise awareness of SUDEP ..." according to its website.
Cenate and her sisters, Jessica Fellows and Jennifer Leonard, are hosting a 5k race on Sunday, April, 24, with all the proceeds going to help pay for Sebastian's animal assistant.
The race will consist of a loop, beginning and ending at the Bellows Falls Fire Department. Registration is at 9 a.m. and the race begins at 10 a.m. It is $25 for adults and $20 for students, which includes a T-shirt. For those who would like to donate but not participate in the race, it is $15 for a T-shirt and $7 for a water bottle.
At this point Sebastian has 24/7 care, where he either is holding someone's hand or is in a safe area in the house, surrounded with padding.
"Right now, we don't want him out of our sight," said Cenate.
According to Cenate and Bellimer, Sebastian likes his independence, but also is afraid to have anything placed on his head because of the amount of electrocardiogram tests that he has had performed on him. As a result, Sebastian will not wear a helmet for safety and it is difficult to convince him to even wear a winter hat.
Sebastian's parents work at the Bellows Falls Fire Department; Bellimer is a full-time firefighter and paramedic and Cenate as a on-call-volunteer firefighter and advanced emergency medical technician. Cenate also works part time with the Bellows Falls Police Department. They currently alternate shifts, which allows one of them to always be with their son. However if they have a scheduling conflict, Sebastian will spend the day with one of his aunts, who is very familiar with his medical needs.
"Somebody mentioned to me — I'm going to try and say this without crying — we had him because we could, because we could take care of him," Bellimer said, alluding to their medical training.
Cenate added that her EMS background has helped her stay throughout Sebastian's seizures and that her instincts kick in a little bit faster because she knows the correct protocol.
"It was helpful, but also unexpected; you never think you are going to be the one in an ambulance and in a helicopter with your own baby. I don't think you are ever prepared for that," said Cenate.
The 5k race will be followed by a barbecue at PK's Pub where there will be live entertainment as well as hamburgers and hotdogs for sale and a raffle where all the proceeds will go toward Sebastian's response dog. Donations will be taken at the door and a fire pit will be raffled for $5 per ticket. A Henry Golden Boy rifle will be raffled for $10 per ticket. According to Cenate, 187 people have already registered for the event and they are hoping more will sign up.
"It's so awesome what the community is going to do because I would take every cent of my own money and put it in to this,"said Bellimer. "You can't put a price tag on freedom for this little guy."
Sebastian may have seizures for the rest of his life, but his parents have worked with doctors over the past five years to detect which medication will reduce his seizures. They have found that many pharmaceutical drugs have nasty side effects. They believe they've had the highest success rate with Palmetto Harmony, an essential oil made from the premium part of the Cannabis Sativa L plant.
"(Sebastian) is already a success story for medical marijuana; there's no question about that," said Bellimer. "This needs to be legalized everywhere, I'm not talking about recreational use, but to make sure that kids have medicine that works."
His seizures have prevented Sebastian from attending pre-k and participating in a number of activities like other children his age. He enjoys basketball, baseball, the beach, camping and riding on four-wheelers. He is a cognitively and physically able, but his unpredictable seizures, that range from none to three times per day, cause his parents to be especially cautious.
"(Sebastian) inspires me everyday with his unconditional love; like his Mum, he doesn't have a mean bone in his body," said Bellimer. "He is just an incredible soul, I can tell he has big things in his future."
Individuals can register at the event or register online. The registration document can be found on the "Team Sebastian," Facebook cause page. Donations may be sent to Sebastian's mom at Jillian Cenate, 77, Atkinson St., Bellows Falls, VT 05101.
Maddi Shaw can be reached at 802-254-2311 ext 275