Crying and praying' for Mason
By Vikki Hopes - Abbotsford News
MASON Martens is a blur of activity. One minute he's playing with his kitchen set, the next, he's building toy cars.
Before you know it, he has dragged one of his older sisters into his playtime world.
Occasional screams of "Mommy!" ring through the house, followed by various requests or FYIs.
It's a sound that Mason's mom, Shirley, once thought she would never hear.
Mason, who turns 10 on March 29, has five different forms of epilepsy that have resulted in developmental delays. He has the developmental capacity of a three-year-old.
"I remember crying with a friend one time, Ãƒ¢€š¬Ã…¡¬ÃƒÆ’‚¬¹Ãƒ€¦‚¬Å“If I only heard him say "Mommy," that's all I want.' Now I hear him in the middle of the night: Ãƒ¢€š¬Ã…¡¬ÃƒÆ’‚¬¹Ãƒ€¦‚¬Å“Mommy!' " Shirley laughs.
The Abbotsford mom has detailed her family's struggle on a blog (masonm.blogspot.com) that she began in 2003. She initially started it to keep family and friends informed of Mason's progress, but found it to be much needed therapy.
"I go back [and read past entries], and I'm just reminded again of what we've gone through," Shirley said.
This is Epilepsy Awareness Month, and the Centre for Epilepsy and Seizure Education in Abbotsford holds Purple Day on March 26 to draw more attention to the issue. (See sidebar.)
The Martens family is the centre's "community champion" for the cause.
Shirley said she wants others to understand what it's like to live with epilepsy.
Mason appeared to develop normally until he was 18 months old. One day, Shirley and her husband, Daryl, noticed that Mason's body would sometimes do a little twist when he was running, and he'd get a "funny look" in his eyes.
A couple of days later, he had his first seizure.
"He was sitting in his high chair and went like this" - Shirley slumps forward - "into his cereal."
The episodes intensified to the point that Mason was having back-to-back seizures for up to 10 minutes at a time.
A five-day stay in BC Children's Hospital led to a diagnosis of "infantile spasms" - which is often resistant to treatment - and "severe developmental delay." Doctors, to this day, do not know what brought on Mason's condition.
Over the next few months, Mason started having another form of seizures known as myoclonic, where there is no loss of consciousness and there are single or repetitive jerking motions of the muscles.
He would have three to six episodes a day, each consisting of up to 100 seizures and lasting from 10 to 45 minutes. Seven different medications were prescribed in the first six months after his diagnosis. Two worked temporarily - for up to two weeks - but that was the most relief the family had until Mason was six.
Meanwhile, the seizures continued around the clock.
"It was all-consuming," Shirley said.
"I would be holding him and counting his seizures and crying and praying. The one thing I prayed for over and over and over again is that this would not be wasted - that there would be a purpose."
Shirley had to quit her job as a waitress to care for Mason. The family - also consisting of daughter Asia, 15, and Sydney, 12 - faced restrictions to their social time.
The only time Shirley got out on her own was for the women's Bible study classes she attended every Wednesday.
Mason's repertoire of seizures grew to include absence, tonic drop, and grand mal (also known as tonic-clonic). A more official diagnosis summed it all up as Lennox-Gastaut syndrome, a form of epilepsy characterized by frequent and different seizures.
The "drop" version resulted in Mason going completely stiff, and falling to the floor without warning. He had to wear a helmet with a face shield.
A "vagal nerve stimulator" - a device implanted in Mason's chest which would send electrical impulses to his brain during a seizure - helped reduce the number and intensity of the seizures. So did a precise ketogenic diet consisting of 90 per cent fat.
Dramatic results did not happen until almost four years ago, when Mason underwent a form of brain surgery called corpus callosotomy that separates the cerebral hemispheres - in other words, splits the brain in half. The procedure is used in severe cases of epilepsy in which frequent seizures affect both sides of the brain.
"When you look forward to brain surgery, it tells you how bad it was before," she said.
The procedure worked so well that Mason's development skyrocketed. The seizures result in memory loss and, with them no longer as severe or as often, he could finally learn.
"It's been 3 1/2 years and we're still amazed. Every week he does new stuff."
Before the surgery, Mason had a vocabulary of about 30 words. Now, Shirley has lost count. He still has seizures, but only two to five a day.
"Most of them are just tiny little things. You hardly notice them."
Even the little things - like Mason getting into the car by himself and buckling up his seatbelt - are big reasons for celebration.
The family is now able to spend more time doing things together, and Shirley has taken up some outside interests. She now leads the women's Bible group that was her lifeline, and she has formed "Imagine Ministries" (imagineministries.ca) at Northview Community Church.
This venture, starting at the end of March, offers a program for children with special needs while their parents attend services at the church.
Shirley also keeps busy connecting with other parents, including a mom in Alabama whose son has the same condition as Mason.
Now, she said she has found the purpose that she prayed so hard to find: being able to help others because of her own experiences.
"It has changed me big time."