Help For Ben and his family
Donation protected
Hey everyone my name is Hollie,
I'm starting this go fund me for one of my customers John. His son Ben is the most sweetest kid in the world he's faced more battles than most of us have ever faced and he's only 5 (6 on Halloween).
Ben has Spinal Muscular Atrophy type 2. A Condition that typically limits your life expectancy and quality of life. Ben began to be affected by the disease when he was only 12 months old when he stopped trying to walk and started to crawl. his little body couldn't fight the battle against a muscle wasting disease that is akin to ALS only affecting a child.
There was no cure and no treatment for children or anyone with SMA. That is until December 2017 when a revolutionary drug made it out of the drug trail phase and was approved to be used safely on patients with SMA. The drug is called Nusinursin now prescribed as "Spinraza".... this is not a cure but a treatment that stops the disease in its tracks and saves the patient from further wasting and allows muscles to being to repair in some cases. It would take another year before the health ministers could approved this drug at all in Canada.
Ben was a case to fight, Canada would not pay for the Spinraza and still today wont pay for all patients to receive the drug. Spinraza costs $160,000 per injection and ben needs this for life every 4 months. Ben would get the spinraza in 2018 under compassionate basis however the double edge sword is that every 4th month he has to show improvement or gain on his hammerscores to be able to receive the drug. This means Bens has to participate in costly therapies and have all the devices related to therapy.
A child like Benjamin has high needs. He does not walk and requires maximum assistance in his daily life. Right now Ben has some needs that are imperative to his quality of life and unfortunately the costs are beyond reasonable.
When john told me what was happening i knew there had to be some way to help here i am. Ben needs Specialized custom orthotics that keep his muscles straight and prevent contractures, He also needs these to practice standing and get his hips to bare weight so eventually he can reach his goal of walking or talking steps.
The cost of his KAFO is $10,558 and the government will pay $4000 but that's only the start.
Ben also requires private in home therapy with physiotherapists twice a week. This is a very costly need and runs mom and dad at $125 per week.
Ben is also required to participate in motion therapy which is in downtown Vancouver and is $75 per session once a week..
so all theses costs add up but here is another problem. Now that Ben has out grown his car seat the safest way for Ben to get to places is in his wheelchair in a specialized van. We need your help in Helping Benjamin reach his goals and give him the safe ride he deserves.
Now a few of you are probably asking what about charity organizations?
Usually the parents would receive help from Variety club and etc but Covid hit charities hard abs there is virtually nothing left to help parents.
So as i write this while you are all probably enjoying your Thanksgiving meals with your family I'm asking you to think of another family in need. 2020 has been a year of struggle for many and the best way we can get through this is for being there for one another, So here i am being there for on of my customers and doing what ever i can to make sure Ben gets the help he needs.
Punk rock pastries has over 4000 followers in face book and over 2000 followers on face book. if each of our followers donated $5 That's 1 starbucks coffee or 2 cupcakes then Ben would reach his goal!
In this day and age its Punk to be kind so please Be kind
- Hollie Deville
Owner of Punk rock Pastries
Burnaby BC
I'm starting this go fund me for one of my customers John. His son Ben is the most sweetest kid in the world he's faced more battles than most of us have ever faced and he's only 5 (6 on Halloween).
Ben has Spinal Muscular Atrophy type 2. A Condition that typically limits your life expectancy and quality of life. Ben began to be affected by the disease when he was only 12 months old when he stopped trying to walk and started to crawl. his little body couldn't fight the battle against a muscle wasting disease that is akin to ALS only affecting a child.
There was no cure and no treatment for children or anyone with SMA. That is until December 2017 when a revolutionary drug made it out of the drug trail phase and was approved to be used safely on patients with SMA. The drug is called Nusinursin now prescribed as "Spinraza".... this is not a cure but a treatment that stops the disease in its tracks and saves the patient from further wasting and allows muscles to being to repair in some cases. It would take another year before the health ministers could approved this drug at all in Canada.
Ben was a case to fight, Canada would not pay for the Spinraza and still today wont pay for all patients to receive the drug. Spinraza costs $160,000 per injection and ben needs this for life every 4 months. Ben would get the spinraza in 2018 under compassionate basis however the double edge sword is that every 4th month he has to show improvement or gain on his hammerscores to be able to receive the drug. This means Bens has to participate in costly therapies and have all the devices related to therapy.
A child like Benjamin has high needs. He does not walk and requires maximum assistance in his daily life. Right now Ben has some needs that are imperative to his quality of life and unfortunately the costs are beyond reasonable.
When john told me what was happening i knew there had to be some way to help here i am. Ben needs Specialized custom orthotics that keep his muscles straight and prevent contractures, He also needs these to practice standing and get his hips to bare weight so eventually he can reach his goal of walking or talking steps.
The cost of his KAFO is $10,558 and the government will pay $4000 but that's only the start.
Ben also requires private in home therapy with physiotherapists twice a week. This is a very costly need and runs mom and dad at $125 per week.
Ben is also required to participate in motion therapy which is in downtown Vancouver and is $75 per session once a week..
so all theses costs add up but here is another problem. Now that Ben has out grown his car seat the safest way for Ben to get to places is in his wheelchair in a specialized van. We need your help in Helping Benjamin reach his goals and give him the safe ride he deserves.
Now a few of you are probably asking what about charity organizations?
Usually the parents would receive help from Variety club and etc but Covid hit charities hard abs there is virtually nothing left to help parents.
So as i write this while you are all probably enjoying your Thanksgiving meals with your family I'm asking you to think of another family in need. 2020 has been a year of struggle for many and the best way we can get through this is for being there for one another, So here i am being there for on of my customers and doing what ever i can to make sure Ben gets the help he needs.
Punk rock pastries has over 4000 followers in face book and over 2000 followers on face book. if each of our followers donated $5 That's 1 starbucks coffee or 2 cupcakes then Ben would reach his goal!
In this day and age its Punk to be kind so please Be kind
- Hollie Deville
Owner of Punk rock Pastries
Burnaby BC
Organizer and beneficiary
Hollie Fraser
Organizer
Burnaby, BC
John Jr Edington
Beneficiary