Toddler responds well to alternative therapy
Thursday, 01 February 2018. Posted in Shootin' the Breeze
Despite limitations from Pelizaeus-Merzbacher disease, Jake Burgman loves taking in outdoor activities with his parents, Jon and Sue. Photos courtesy of Sue Burgman
Toddler responds well to alternative therapy
By Georgia Dale
Jake Burgman is a toddler on the move. He turned three in October, he’s learning to ski and ride his tricycle, and he can’t wait to get his hands on the joystick of his own power wheelchair.
His mom, Sue, practically had to fight to get him a chance to operate it and, now that he has proved his abilities, he will be the youngest person the staff at the seating clinic have fitted to a power chair in years.
Getting Jake a chance to drive the power chair isn’t the only advocating that Sue has done on behalf of her son. It all started when he was about seven months old and Sue sensed that Jake wasn’t reaching some of his developmental milestones. He still wasn’t holding up his head independently.
Due to long waiting times Sue self-referred to a physiotherapist who immediately noticed some irregularities and fast-tracked Jake into a battery of assessments and tests. Ultimately, Jake was diagnosed as having Pelizaeus-Merzbacher disease, a genetic disorder that manifests much like cerebral palsy or multiple sclerosis.
Some of Jake’s PMD symptoms include limited speech, mobility and spasticity in the lower body. Spasticity means that some of his muscles are in a constant state of contraction, making gross motor control very difficult.
At eight months of age, Jake started on a track of physiotherapy, occupational therapy and speech pathology, similar to what most kids with disorders like his are prescribed. They did not see much progress. Jake did not like physio, and screamed in pain and frustration when he was put in the braces and frames that were meant to improve his mobility.
It was around this time, with Jake not making much headway with conventional therapies, that Sue began experimenting with alternatives. When Jake visited an osteopath for the first time, in 2016, they had a breakthrough.
After just one session, Sue noticed a distinct change in the way that Jake engaged with his environment. She says it was like “they woke up his brain” as he began pointing at things and looking around.
This initial breakthrough inspired Sue and Jon, Jake’s dad, to keep pursuing natural alternatives. They still use the information and the baselines provided by conventional medicine to track their progress, but they have also had dietary plans and supplement schedules created by a naturopath to eliminate inflammation and facilitate the myelination of Jake’s nervous system.
According to naturopathic medicine, there is an intrinsic connection between the health of the gut, inflammation in the body and the health of the brain, and a strict nutrition program can improve all three areas.
As an alternative to the more invasive procedures used in usual physiotherapy, they also signed Jake up for some sessions of Anat Baniel Method therapy.
This is where the real magic began to happen.
Jake had his first ABM session when he was one year and nine months old, after receiving intensive physio, occupational and speech therapy for about a year. After the first three intensive sessions of ABM, Jake was able to put himself into crawling and sitting positions for the first time.
After struggling, fighting and failing for a year to get Jake into these positions, his parents were astounded when, all of a sudden, without any prompting, he was able to change his position on his own.
Jon and Sue saw further progress as Jake began to use sign language after his eighth session. His reactions to learning sign were similar to his reactions to physio — because Jake is a determined and independent young person, he does not like it when anyone takes over for him or forces him.
The guiding philosophy of ABM is that the brain and the body are intricately connected. And this connection can be nurtured, or healed, in people with different abilities by creating awareness and building the neural pathways.
For example, Sue explains, when a practitioner is working with Jake to help him increase mobility in his hips, they use “subtle but precise movements.” In addition, they are alert to his emotional state. The practitioners, or teachers as they are called, gently show Jake’s body what it needs to do and then allow him to do it on his own terms.
Together with the success they experienced using naturopathy and ABM, and some doubts about how well the practices recommended by conventional medicine were serving Jake, the Burgmans decided to keep pursuing ABM.
The only problem: ABM is an expensive therapy and it is not covered by insurance in Canada. In Calgary one intensive session for Jake costs $800.
Time to call up some more magic — this time from the community of Crowsnest Pass.
After driving to Calgary for several expensive but successful sessions of ABM, the costs were starting to pile up for the Burgmans. Because of the appointments, and the time commitments surrounding Jake’s dietary requirements (Sue makes absolutely everything from scratch, and as organic as humanly possible), Sue is able to work only part time. With the added costs of uninsured treatments, their 1½ incomes were being stretched pretty thin.
Jon and Sue decided that the best strategy would be for Sue to obtain certification to become a practitioner of ABM herself. And this is where the wonderful community of Crowsnest Pass stepped up and began contributing toward Jake and Sue’s journey.
Since it was created in July of last year, Jake’s GoFundMe account has raised $80,276 thanks to the generosity of Crowsnest Pass residents and some successful fundraisers.
In October, Pure Country Bar and Grill hosted Jake’s Golden Ticket Dinner and Dance, and Sue says the energy was “incredible.” This event raised a whopping $28,851.
The Ricky Ryp Foundation and Coleman Lions each made donations of $5,000. Other donations have arrived in droves from generous friends, family and community members.
On the weekend, Riversdale Natural Resources held its annual Australia Day celebration. Every year, Riversdale selects a cause in the community to contribute to. This year the company chose to support Sue’s venture and, while a final tally is not yet available, it is clear it is Riversdale’s most successful fundraiser to date.
By investing in the Burgman family, Pass residents have shown great instincts that will serve the local economy and the community as a whole. They are showing support for a courageous and creative young family that is dedicated to mountain living. Both parents work in the Pass at local businesses.
When Sue gets her certification she will be able to extend the benefits of ABM to other members of the community, including individuals with disabilities, people who have experienced brain damage as well as people struggling with dementia and Alzheimer’s disease.
Above all, Crowsnest Pass is helping a family assist their son on a journey towards wellness, independence and success that they never thought possible without the help of an innovative new therapy. The Burgmans could not be more appreciative.
Jake giggles with delight during an Anat Baniel Method session with Renée Gray. He is achieving measurable success with this mode of therapy.