September 27th, 2017 ~ Vol. 87 No. 39
$1.00
HOME
CLASSIFIEDS
WEATHER
RCMP STATS
WORLD NEWS
CANADA NEWS
ALTERNATIVE
CONTACT US
ARCHIVES
SUBSCRIPTIONS
STORY IDEA,
COMMENT,
OR NEWS TIP?
Golden Ticket for golden boy
Crowsnest Pass Herald Front Page
Anna Kroupina Photo
Just a few weeks shy of his fourth birthday, Jake Burgman crawls on the foam obstacle course at the MDM’s Indoor Playground surrounded by his friends.
ANNA KROUPINA
Pass Herald Reporter
At the Indoor Playground in MDM Community Centre on September 15, half a dozen children run and jump on the mats, go down the slide, play with blocks and drive around in toy cars.

The kids and their mothers are there to show support and appreciation for one little golden-haired boy diagnosed with Pelizaeus-Merzbacher Disease (PMD), two year-old Jake.

It took three agonizing years for young parents Sue and Jon Bergman to figure out that their son Jake has PMD, a rare genetic spectrum disorder that affects the central nervous system and causes symptoms similar to Cerebral Palsy and Multiple Sclerosis.

It was a long journey for the Bermans to finally determine Jake’s condition, understand what it is and find the proper treatment that will help him rehabilitate.

Just three months after Jake was born, the Bergmans noticed that Jake had a developmental delay as he still wasn’t able to hold up his own head.
continued below ...
Continuously reassured by doctors that Jake was just lagging behind and needed more time to develop his motor skills and neck muscles. At seven and half months, feeling that something more was off when Jake was still not able to hold up his own head, the Bergmans self-referred to a physiotherapist amid doctors’ reassurance that he simply needed more time.

“It went haywire from there,” says Sue. “It went test after test after test. They knew that something was majorly off, but they couldn’t figure out what.”

Jake continued to other aspects of developmental delays as time went on.

“He had no idea that he had a pelvis. He wasn’t using it. He was army crawling, just dragging himself with his forearms across the floor. He had a hard time rolling, he wasn’t sitting and he had no sign language, so there was no way of communication,” says Sue.

The Bergmans were bounced around from specialist to specialist doing test and test trying to figure out the cause of Jake’s condition.

It wasn’t until they were referred to a geneticist and conducted a gene test in February 2017 that they discovered the cause of Jake’s delays: PVM.
continued below ...
“Jake has mutation in the PLP1 gene, a protein essential to build myelination around nerve fibers in the central nervous system,” explains Sue. “Myelination is like the insulation around a nerve fiber, so it’s like an electrical cord. If that insulation around the cord is broken, there will be misfire; the signal doesn’t get through. With Jake, that myelination has never fully formed because the gene that makes that protein needed for myelination has a change.”

This led the young parents on a journey of urging Jake to see a range of specialists that had minimal improvements for Jake.

“The more they tried, the more he resisted,” says Sue. “The more we worked with him, the more spastic he got. The more therapy we did, the more frustrated he got. He hated it, he screamed. It was not fun to watch or do.”

It wasn’t until Sue, desperate for answers, discovered the Anat Baniel Method (ABM), an alternative neuromovement therapy. Through liaising with mothers with children with developmental disabilities online, she read a book written by a mother who treated her son with ABM and witnessed incredible results.

“For the very first time, I was reading that book and teared up because it felt like finally, somebody understood us. Somebody knows how his brain works. It felt like she wrote the book about Jake,” she says.
continued below ...
In the few months that the Bergmans have been sending Jake to Renee Gray a certified ABM practitioner in Calgary, he has made greater strides and progress than he had in an entire year of traditional forms of therapy.

“Through those very gentle, but very specific movements, they are creating new neuro-pathways in the brain. We don’t force any movement at all with it, we just go within his range of where he’s at and show him that there’s different ways to move,” says Sue.

Within one week of working with Gray, Jake was able to perform three signs. Now, he knows approximately 30 signs and a dozen words. He can now succeed at movements like sitting unassisted, getting into a four-point table position and crawling, which may seem trivial for a boy of almost three years old, but are great feats of achievement for Jake.

ABM therapy, while hugely successful for Jake, does not qualify for coverage under any healthcare plan and ends up being a very expensive treatment. The Bergmans continue to use Chinese medicine and osteopathy, which have helped Jake in their own ways, to complement ABM therapy.

Jake’s Golden Ticket

This led to the Jake’s Golden Ticket fundraiser, a night of a dinner, a dance, a silent auction and, more importantly, a cause.
continued below ...
The fundraiser, organized by Ricky Sharma, is a golden ticket for Jake’s rehabilitation, but indirectly, it is a golden ticket for all children in the area with various developmental disorders. Through the fundraiser and their online funding campaign, the Bergmans hope to raise $100,000 to allow for Sue to undergo ABM training herself.

“Once I have that knowledge, I would quit my job, change careers and treat kids with special needs, whether it’s autism, ADHD, cerebral palsy, or other genetic disorders like Down syndrome,” she says. “That’s going to be the journey, to try to help other families that are in the same situation as me where they’re just frustrated with what the medical system provides and not knowing where to go.”

Jake’s Golden Ticket fundraiser will be held at Pure Country, whose owners graciously gave the Bergmans a significant discount on food.

Sue’s good friends Lindsey Michalsky and Amber Vanderplas also organized a fundraising campaign on the Go Fund Me platform.

“We were very reluctant to having a fundraiser and going public with it. It’s hard. Nobody likes to ask for help. Amber has wanted to set something up for a long time, but we kept saying that we’d figure something out. After meeting with the bank and seeing how much the training is going to cost, every avenue we explored had roadblocks,” says Sue, who adds that since the ABM training is not through an approved educational institution student loans and government grants are not accessible. “Finally we let Amber put it out there. It was a very frightening thing because we never posted anything public about our challenges with Jake. We didn’t want to put it out there and ask for sympathy.”

The response from the community, however, has been overwhelmingly positive, says Sue.

“We didn’t have any of that pity. We had a lot of support and a lot of people expressing how proud they are of what we’re doing and how blessed he is to be with us. The Crowsnest Pass has really come together and we’re beyond overwhelmed with how much everybody’s put in, and not just money. We’ve gotten so much support in so many different ways,” says Sue.

Jake’s Golden Ticket fundraiser is taking place on October 7 at Pure Country, just over one week before Jake’s third birthday. Tickets are $50 and can be purchased from the Crowsnest Insurance Agencies and Scotiabank in Blairmore, or by calling Sue (403-563-8761) or Jon (403-583-3111).

Donations are also accepted on the Go Fund Me platform at https://www.gofundme.com/jakeneedsourhelp.
HOME PAGE
news@passherald.ca
403-562-2248
$1.00
September 27th, 2017 ~ Vol. 87 No. 39
All information on this website is Copyright (c) 2017 Pass Herald Ltd. All rights reserved.
12925 20th Ave, Box 960, Blairmore, Alberta, Canada T0K 0E0 | news@passherald.ca | 403.562.2248 | 403.562.8379 (FAX)