What do you do when you realize that your child is in trouble? What do you say when the doctors tell you that your baby boy will never walk and there is a high possibility that you will never be fortunate enough to hear his beautiful little voice form actual words, when all you want to hear from him is "Mommy, I love you", or "Everything will be ok, Daddy, dont worry". What do you do, when all of his peers are starting to walk, run and talk, while you have been doing all sorts of therapies for a year, hoping that one day, he will be able to learn how to sit and hold his head strong, maybe even say a few words...
You start in denial. Hoping one day he will grow out of it.
Then, you move into anger, wondering why he has been given such difficult challenges. You frantically start to look for a way to "fix" him.
After, you are moving into the grieving stage... you have realized this is not something that will go away or can be "fixed". Only time will tell what his future holds. You cry... A LOT!
Finally you enter the stage of acceptance and appreciation. You start to see him for the way he is. You start to notice and appreciate all the little things that make him so special and you realize that he is here to bring joy and teach you many things.
He is a special gift who will transform your life forever!
This is the journey my friends have been on for the past 3 years!
After a very long, heart wrenching two years of searching for answers, Jake received a diagnosis in February 2017. He has been diagnosed with Pelizaeus-Merzbacher Disease (PMD), a rare genetic condition which is causing symptoms similar to Cerebral Palsy and Multiple Sclerosis. There is no cure for this yet and little hope from the doctors that he will ever walk or live independently.
However, the family has a lot of hope for Jake and are taking the prognosis lightly. With the untraditional approach they are taking, they have already seen Jake move in ways that surprised his doctors and specialists.
How it all started;
After seeing a countless number of doctors, therapists and specialists with little to no results, the family finally found a combination of treatments which started to make a difference in Jake's awareness, energy levels and way of interaction. Although he was moving along nicely, there was still a lot of movement restriction, leading to a fair amount of frustration.
The Turning Point
My friends found a therapy that seemed to be the missing link, The Anat Baniel Method (ABM). ABM is a Neuro Movement Therapy, which focuses on creating new pathways in the brain by the application of gentle movements of the body. Now, everything started to fall into place, his body started doing the things his mind was trying to do for a long time. He started moving in ways we had never seen before. After just one intensive session, he immediately started to use sign language, something the parents had tried to teach him for over a year with no results. Finally, with the aid of ABM, Jake transitioned himself from laying on his tummy to sitting unassisted for the very first time, just two weeks before his second birthday.
The memory of this day will last forever! This was the day my friends received renewed hope that anything is possible when you find the right approach.
It has now been almost a year since they started ABM and Jake continues to make wonderful progress. He is currently working on perfecting his crawling abilities.
Unfortunately, ABM practitioners are hard to find. The closest one to the family is in Calgary. It is also a therapy which is not covered by any type of health insurance or benefits and quite costly! This leaves the family having to travel often, spending time apart and running into financial difficulties. Caring for Jake and accommodating his appointments means that the mom can only work part time. With the extra expenses and lower income, things have been becoming really tough for them.
How Your Support Will Help!
To help their family situation, my dear friend and amazing Mom, Sue has decided that she would like to take the training to enable doing home therapy for Jake. This would enable them to provide Jake therapy right in their home, EVERY DAY, which means no more travelling and spending time apart, while Jake would benefit from much more intensive therapy.
The schooling involves 14 segments, 10 of which are in the U.S., spread over the time period of 2.5 years. The program is not yet being taught at an accredited educational institution, therefore not eligible for a student loan. The training will roughly cost about $100,000 including tuition, flights, hotels, plus another $50,000 to bring Jake along each time so he can receive therapy from their top practitioners, while Sue is in class. My dear friends have been selling off whatever they can to liquify some assets to make it work but it is just too much for them to handle on their own. They have sold almost everything short of their house, in which they do not have enough equity to even come close to covering the cost.
Impact on Jake
With this therapy applied more intensively, it is likely that Jake will accomplish things he isn't believed to be accomplishing otherwise. They currently go to Calgary for therapy once a month as that is all they can afford. Imagine what a difference of working with him EVERY DAY would make!
Please donate to enable Jake to get the therapy he needs to continue to advance and help him live a life of strength and independence.
Your support will mean the world to this amazing, loving family - every little bit helps.
We will be sure to provide pictures and updates on this little sweeties progress. To follow him, please visit his facebook page, created for family and friends to keep up with the progress:
Let's help Jake!
A Caring Friend
Jakes Mom and Dad - Sue and Jon
Welcoming this gorgeous baby boy to the World!
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