Bowls and spoons will be the order of the day at a June 5 benefit for a local teen who has lost the use of his legs.
At last count late last week, 21 kinds of soup will be available and at least six local restaurants are also donating a pot of soup, explains Sarah Sutton, one of the organizers of the benefit to aid 13-year-old Sawyer Seinen who is now a paraplegic from complications following a surgical procedure.
Sawyer was born with Heterotaxy Syndrome, requiring open heart surgery two times before his fourth birthday.
He's lived an average life for the past 10 years apart from annual checkups with the latest one taking place at the Stollery Children's Hospital in Edmonton during break. That's where his cardiology team is and on March 20, he had a cardiac catheter installed to widen a conduit put in place when he was eight months old.
"The goal of the cardiac catheter, which is a cardiac intervention that usually requires overnight observation for one night, was to improve his blood flow and ideally improve his exercise tolerance," said his mom, Jana Seinen of the procedure.
"Unfortunately, for unknown reasons after the procedure, a clot formed along Sawyer's spinal cord and the pressure caused damage to the spinal cord. He underwent urgent neurosurgery but the damage to the spinal cord appears to be permanent," she said.
"Further testing has confirmed Sawyer is paralyzed up to his T6 actually which means that he cannot feel or move anything below that point on his chest from the 6th thoracic spine region down."
Although Sawyer's spine is not severed, and although there's a possibility of a miracle return of sensation and/or movement, the family has been told this is very unlikely.
Sawyer has been at the Sunny Hill Acute Rehabilitation Unit at B.C. Children's Hospital since April 17 and is expected to be there anywhere from three to six months.
"He is building strength in his upper body and learning ways to transfer and move that do not involve his lower limbs. He is learning to balance with the abdominal muscles he does have. Therapy also includes teaching him to carefully turn himself at night to avoid pressure sores, manage his body functions, and learn mentally to cope in the world without his legs," said his mom.
"Additionally, because of his cardiac history his lower limbs must be moved in order for his single ventricle circulation to work so he spends time daily on equipment that provides passive movement of his legs. Sawyer must learn to protect and care for his shoulder muscles as time goes on - as this is how he moves now."
Sawyer also makes trips to the nearby G.F. Strong Rehabilitation Centre where with adults he is learning wheelchair skills such as balance, movement and navigating difficult terrain.
At Sunny Hill, his mom says Sawyer's personality is such that he knows everyone else on the ward and has been praised by staff for including others in group games and by engaging with staff.
"Sawyer has had no choice his whole life to be brave and his perseverance in the face of incredible challenges since this tragedy is incredible. Sawyer will continue to grieve the loss of function obviously but he is choosing to live life to it's fullest," she said.
Renovations at the family home will include a ramp up to the front door and items such as a couch that reclines fully and recreational equipment such as a handcycle bike will be ready for Sawyer.
"The support and encouragement of the community and our families, and our trust that God is in control have been the factors that have helped our family through these challenging weeks," said his mom.
For the benefit, Sutton anticipates at least two gallons of each kind of soup and double that volume for popular ones such as wonton, chicken noodle and meatball.
She estimates that a volunteer crew of 40 people are involved in the benefit.
There will be a cake walk open to all ages and for those Grade 6 and under, carnival games such as a bean bag toss, fish pond and tic tac toe.
The June 5 event takes place at the Houston Christian School beginning at 5 p.m.
Those wishing to donate but unable to attend can do so through the Bulkley Valley Credit Union as "Donations to Sawyer Seinen" or via etransfer, servingsawyer@gmail.com.
Mom Jana and Dad Jon will not be present but will have a video to share. Siblings Sydney and Liam attend Houston Christian School and will be at the event.
