How one Calgary girl takes strides despite her disabilities

While most people resolve to lose weight or quit smoking on New Year’s Day, three-year-old Jemma Kletke decided on something a bit more simple this year — to take just a few steps.

Holding her Mom’s hands on a cool winter’s day, Jemma did just that. With her trademark smile plastered on her face, she managed to prove her doctors wrong with just a few wobbly steps.

When Jemma was four months old, doctors said that she would never even be able to hold her head up, says Jenn Kletke, Jemma’s mom.

“Looking at her now, it’s amazing.”

On Nov. 9, 2008, Jemma was born with a blood clot in her brain – a fact that has changed the course of her life.

While most parents are trying to master the art of changing diapers the day after the birth of their child, Jemma’s parents, Steve and Jenn Kletke were watching their newborn undergo MRIs, spinal taps and IVs.

“The beginning was devastating,” Jenn says.

“I would think, this isn’t happening to us. This is what you hear about happening to someone else. This is not our baby.”

Test results showed that Jemma had optic nerve damage as a result of the blood clot, and doctors were unsure about the extent to which her vision had been compromised.

Steve and Jenn realized from the start that Jemma was completely blind because she wouldn’t squint when they flicked the lights on for her midnight feedings, Jenn says. “She would never look right at us.”

The challenges that come with being parents of a newborn were multiplied further for the Kletkes when Jemma’s head began to swell at three months old. Jemma was rushed to the hospital for more tests where it was determined that she had hydrocephalus – a condition that causes fluid to collect in the brain – another complication of the blood clot.

Jemma was fitted with an emergency shunt to drain the fluid from her brain into her stomach, leaving a bump on her skull that will have to be concealed behind her golden blonde hair for the rest of her life.

While most babies are beginning to crawl at around 10 months, Jemma faced yet another complication from the blood clot she had been born with — seizures. Despite being put on preventative medication shortly after the diagnosis, Jemma’s eyes would flicker and her small body would continue to twitch several times a day.

In January 2010, Jemma was diagnosed with cerebral palsy – a blanket term for disorders of the brain and nervous system that can affect movement, learning, sight and hearing.

Frustrated with the lack of progress they were seeing in their daughter’s treatment, the Kletkes sought out a new neurologist in July of 2010 – who ordered a 24-hour test to monitor the activity in Jemma’s brain over a prolonged period.

The test showed that little Jemma was suffering from over 50 seizures a day in the right side of her brain. In a unanimous decision, a board of neurologists agreed that she needed a hemispherectomy — a rare surgical procedure that disconnects half of the brain.

After Jemma underwent the surgery in September 2010, her parents say they began to see remarkable changes in her development.

“After her brain surgery, we were afraid that she would lose everything she had learned, but the opposite happened. She started talking more,” Jenn says. “She began to sing.”

With the vocal sounds of a two-year-old ringing throughout their home, the Kletkes realized they would no longer settle for the bleak prognosis that several doctors had given them, and began to take Jemma’s care into their own hands.

“You have a share in how your child is cared for,” Jenn says. “You have a right to say no to things.”

In December of 2010, the Kletkes said “no” to traditional physiotherapy and took Jemma to Toronto for Cuevas Medek Exercise treatments – a non-traditional approach to improving the motor skills of functionally challenged children.

“Typical physiotherapy teaches you to use a walker, be in a wheelchair, and lines you up to be immobile for your life,” Jenn says. “We were not going to settle for that.”

The treatments would see Jemma being held as she moved through the air, twisting various directions and then being placed upright in an attempt to teach her brain vertical and horizontal orientations.

“After that trip she began sitting up, which had never happened before,” Jenn says. “This therapy just took our breath away.”

Consecutive trips for Cuevas Medek Exercise treatments to Montreal in 2011 and Chile in 2012 helped Jemma reach her big accomplishment – those wobbly first steps – early this year.

But as Jemma began to take strides in her mobility, her parents wondered if there was hope for her sight. Taking matters into their own hands once more, the pair flew Jemma down to Georgia in March.

She was to see the same functional neurologist that treated Sidney Crosby during his concussion in hopes of finding a way to repair her vision.

The innovative health care practice aims at healing or rebuilding paths in the brain to restore functions without surgery or drugs. Patients are tested for function and appropriate exercises are assigned.

Jemma sat happily every day for a week in the doctor’s office as her brain function was tested, telling her favourite joke, “I’m 10,” to everyone she encountered along the way. While Jemma giggled, her parents beamed as they were told for the first time in their young girl’s life that there was hope for her sight.

“We were told that her retina is receiving signals, sending them to the brain and her eye is responding,” Steve says.

While there is still a long way to go before she will be able to pick out her favourite colour, Jenn and Steve Kletke say they are cautiously optimistic about their daughter’s future.

This summer, Jemma will pack that trademark smile all the way to Paris for more Cuevas Medek Exercise treatments while her aunts plan the Hope for Jems silent auction to help offset the costs of her care. Cuevas treatments cost over $400 per day and visits to the functional neurologist at $1,000 per day are starting to take a toll on the family’s finances.

“We never know at what point to give up on sight, or what point to give up on mobility,” Steve says.

And after three years of challenges and baby steps toward a better future, hope for Jemma will not be given up anytime soon.