BOUNTIFUL — When Jeremiah’s daily seizures went from 300 a day to 85, there was hope.
When his brain started to atrophy, there was concern.
Still, the family of eight-year-old Jeremiah, whom they affectionally call by a nickname he gave himself, “Miah,” are doing everything they can to improve his situation.
“We’ve gone through every medication that’s on the market,” said Angie Mathews, his mother.
Jeremiah has a vagus nerve stimulator implanted and, when he stopped eating and drinking recently, he was given a feeding tube.
There is more they hope to do, but it will require experimental treatment outside Utah.
“We want to do anything we can to help him,” she said. “Obviously, any parent would. We hate seeing our kids suffer.”
The next options require a trip to either Pennsylvania or Tennesee, where he would be evaluated for two months with different medications and treatments.
The Mathews are hoping a new implantation device will further prevent seizures.
To help fund that venture, the family is participating in Ride the Brainwave Fundraiser on July 12, an event held to benefit underprivileged and at-risk children.
More than 40 children will be the beneficiaries of the fundraiser, which includes a 5K walk/run/roll and a motorcycle rally.
In most cases, the children are being treated for cancer.
Jeremiah is unique in that he is dealing with a rare form of epilepsy, Lennox-Gasaut Syndrome.
There are no typical days for the family.
Though he’s now eight, Jeremiah walks and talks like a two-year-old and his mental capacity is not expected to advance beyond that.
If he is having a good day, the family will take advantage and do something on the spur of the moment.
“We have to be very spontaneous,” said Angie Mathews. “We can’t really plan everything.”
Since April, Jeremiah has been taken to the hospital 12 times when the rescue medicines they have at home haven’t worked.
It could be something as simple as a common cold or dehydration that causes the reaction.
“We deal with it,” said Angie Mathews. “It’s what God gave us to deal with.”
The fundraiser takes place in the Draper Spectrum parking lot and either the ride or the walk costs $25.
Of that amount, $10 goes to the designated family.
“We want to have the biggest team there,” said Mathews.
Registration and information is available at childrenandtheearth.com.
Direct donations to the family can also be made through gofundme.com/JeremiahMathews.