She lives in constant fear of when the next proverbial lightning bolt will strike her son.
When it does – and it will about three times a day – the brain of Sheri Chamber’s three-year-old boy Jakob will be thrown into a complete short circuit, electrical charges jumping between neural pathways, causing his eyes to roll and head to drop.
This is the more common type of event for Jakob, called a juvenile seizure.
The seizures are result of Tuberous Sclerosis Complex (TSC), which causes non-malignant tumours to grow throughout his entire body.
They invade his kidneys, heart, eyes and skin, and at this stage of his life, they are showing up in his brain. (There are about five tumours present now, but they continue to grow in size and number).
And while the frequent juvenile seizures are bad enough, they have a much more serious counterpart.
That is the status seizure, a life-threatening event that throws Jakob into a prolonged series of convulsions.
These seizures are troubling, violent and potentially deadly.
The last time it happened was July 2013, at Langley’s Willowbrook Mall, when Jakob dropped to the ground and trembled.
As in all the other events of this type, Sheri calls an ambulance, and paramedics medicate her son heavily to stop the seizure as soon as possible.
The high dose of medication shuts down his breathing, so he has to be intubated (a tube surgically inserted through his throat into the airway so he can breathe).
He’s then rushed to the hospital.
At his Surrey home on Friday, Jakob presents as a happy and playful tot, and frequently flashes a 10,000-watt smile when playing.
He was diagnosed with TSC when he was just months old and the seizures started shortly after.
For him, this is normal.
However, Chambers (above) knows otherwise and lives in never-ending fear that Jakob will die from one of the status seizures when she’s not around to help.
Jakob’s best hope turns out to be man’s best friend.
He needs a dog trained in seizure alert and rescue.
The canines can smell when the seizure is about to occur. If Jakob falls during the event, as he does with the status seizures, the dog will roll him on his side so he doesn’t choke on his tongue.
Then the dog runs for help.
The canines are trained at a facility called 4 Paws for Ability in Xenia, Ohio.
The financial commitment for the Chambers is $14,000, a sum the family can’t easily put together.
The family’s church is reaching out to help Jakob.
On Sunday, June 22 at 7 p.m., WestWinds Community Church is holding a fundraiser at 6331 176 St.
It will include silent auction, door prizes, circus performers, food and more.
All proceeds will go toward a seizure dog for Jakob.
For tickets or more information, contact WestWinds Community Church at 604-576-9407.
For more information about Jakob and the fundraising event, visit http://www.firstgiving.com/fundraiser/jakobchambers/
What is Tuberous Sclerosis?
• A rare genetic disease that causes non-cancerous lesions throughout the body.
• Often detected during infancy or childhood.
• There is no known cure for TS.
• With the right treatment, those with TS can live full, productive lives.