Bring More Pep to Sonya's Step!
Donation protected
Hi!
My name is Sonya! I am a 20 year old theatre student-turned-case-manager living with mild Spastic Diplegia Cerebral Palsy. CP is a neuromuscular condition folks are born with that can affect one’s physical and cognitive abilities to varying degrees. For myself, it manifests physically in an altered gait, frequent falling, compromised stamina and energy, chronic pain, difficulty with steps, an intense startle reflex, and sub-par motor skills. Essentially, I’m not going to be the next American Ninja Warrior, and know what it means to manage pain. Why am I telling you this? A little over a year ago I discovered Hanger Clinic’s Exosym brace through a blog called Cerebral Palsy Strong (go check it out- it’s so cool! https://cerebralpalsystrong.com/). The Exosym is a revolutionary prosthetic-orthotic hybrid that is changing the game for people with lower limb issues- eliminating many of the symptoms I mentioned I deal with. I was hand picked as a candidate for this brace by creator Ryan Blanck, and for the first time ever, the possibility of a life without falls and the constant threat of pain is real for me. It seems too good to be true. The catch? It’s $20,000.
The Device-
About 5 years ago, Orthotist Ryan Blanck noticed a staggering number of leg amputations in his work with veterans. He knew there had to be a better way. Then in San Antonio, TX, Blanck drafted up the IDEO. Originally meant for the veteran population, the device eliminates lower limb pain by diverting energy or strain from injured or weak areas, and redirecting that energy to give wearers a “boost” as they walk. This is accomplished through a strut in the back of the brace that acts as a shock absorber. The IDEO is reported to have prevented over 100,000 lower limb amputations. See the early results of the Exosym here: https://www.youtube.com/watch?v=NhlTjC10oq4
As positive results continued, the need for the brace became evident, and Blanck relocated to Gig Harbor Washington to produce the device for the civilian population with Hanger Clinic, which is regarded as one of the most cutting edge facilities for orthotics and prosthetics in the country. The fitting of the brace is coupled with an intensive training regimen, ensuring that users get the most of their mobility while wearing the brace. The Exosym is set apart from typical AFO bracing (what I’ve been wearing for 18 years now, and am dependent on), in so much that it does not do the work for you to walk, but instead supports the muscle strength and movement you do have to push your function to its highest potential. In typical bracing, I lose all ankle motion and the movement of my dorsal and plantar (foot) muscles in exchange for increased strength and stability. As a result, my muscles have atrophied and my feet aren’t good for much without the brace. However in the Exosym, the minimalist design with the struts allows one to build muscle and increase range of motion while wearing the brace. As a result, it takes some working up to meet what the device requires, and so the training element is crucial.
Since the Exosym is only made in Gig Harbor, people with various physical challenges come from all over the world seeking the life changing, astonishingly consistent results. Here are some stories about the impact of the brace, that explain better than I can about how the device works:
Katy Fetters (CP Strong): https://www.facebook.com/cerebralpalsystrong/videos/1585557758160387/
Beth Shaver: https://www.youtube.com/watch?v=DYFIcGlW0w8
Hanger’s Info Video: https://www.youtube.com/watch?v=dlqel7udvEI&t=163s
Obviously for everyone the results are different, and I will be wearing TWO Exosym braces because my condition affects me on both sides (re: Diplegia). That said, all of the same improvements can be in my future, and I am ready to work hard.
The Patient-
Whooooooo is your donation helping? I have been told I am a spunky, thoughtful human being who does her best to do good. Growing up with CP was not easy. Born over three months premature alongside my twin, AJ, my moms had their hands full from day one. Despite bleak prognoses of not walking, talking, or attending mainstream school, I defied each dubious doc with intensive therapies, determination, tears, and optimism. By age four I was a chatterbox in pre-K, and at age 5 I was speeding down a soccer field in a little red walker. Early on, I grappled with big ideas like what it means to be disabled, equality in education, and my own independence. At age 8, I had my first operation- a release (snip and tug) of my left heel cord. With my family’s help, I got through it with flying colors. This was just a taste of what was yet to come.
As I grew older, I felt the pressure of wanting to fit in that comes with being a teenage girl. I packed my days with more, and pushed my changing joints and muscles to their limit. It was harder for me to find motivation for PT, and I was falling and hurting more. Then one day, a man approached my parents in a pumpkin patch, of all places. He said he was a Shriner and referred me Shriners Hospitals for Children because they “may be able to help me”. So, not knowing what to expect, my parents and I trecked out of state to see what the deal with Shriners was. Soon, I was getting a gait analysis to see exactly how I walked. Using the technology to make the blue people in Avatar, little microphones and cameras were put on my muscles to track the most minute of my inner workings. I walked and clinicians watched; measurements were taken.
The verdict? SIX operations. All or nothing. And time was ticking, because my growth plates were setting. I was 14 years old. After many a second opinion, I decided to go forward with the operation: my prognosis otherwise did not look good. I could lose much of my mobility by my mid twenties, and risk serious injuries and joint deterioration until then.
The 10 day hospital stay that followed is a blur, all of it spent in pain and medicated. Leaving the hospital was just the beginning of what was a two year recovery period, as I had a follow up operation the following spring. I enduring grueling pain and rehabilitation while in high school as I acclimated to my new legs. Seemingly constant appointments had me drifting between two worlds: the medical and the non-medical. I sported a walker for the first time in nearly 10 years my sophomore year in high school. I thought I would never regain a sense of normalcy again.
But then, when I was 17, things began to level out. I enjoyed all the excitement of senior year, looked forward to college, and was motivated to make a full length documentary on disability entitled The Souls of our Feet: http://thesoulsofourfeet.squarespace.com/.
By the time I turned 18 I was walking further, standing longer, and falling less than ever before.
I went to Boston to study theatre at a collegiate level. Though I saw improvement in my mobility post-op, independent living and a new city presented their own unique challenges. I continued to push myself and sustain injuries every so often, the most notable being a jaw contusion after literally falling face first into a door. Face injuries included, I enjoyed school, eventually finding my way to Phamaly theatre company in Denver, CO, the only professional company for disabled performers in the world.
In the safety of this community, I was forced to take a closer look at my mobility challenges and minority status. When I returned to school, the weight of both of those things sat heavily on me. So when my financial aid was cut the following summer, I was devastated, but believed taking some time off of school could be a good thing.
I decided to move to Denver semi-permanently, taking a job as a case manager in a program for people with disabilities experiencing homelessness, which complemented my interest in life with disability. It was during this transition that I explored wheelchair usage. Growing up, a wheelchair meant failure. But now 20, I was tired of being tired, and a wheelchair was the obvious solution if I couldn’t change my legs themself. I yearned for something like the Exosym, but could not imagine such an option. The wheelchair set my parents back $2200, not an easy ask. While the wheelchair is a helpful tool, it is glaring in it’s imperfections 6 months into usage. I can’t use it in rain or snow, over cracks or potholes, it is finicky in it’s joystick navigation, I have to be ever-aware of battery life, and there are the ever present realities of inaccessibility and chronic mobility loss.
Finding the Exosym and being approved for candidacy could not have come at a better time. But, with the financial impact of the wheelchair, ongoing maintenance costs of life with CP, and the looming expense of school, without your help it is not a reality for me despite months of hard work and saving. Simply put, ya girl doesn’t have $20,000.
The Logistics-
So that said, How am I going to get to Gig Harbor?
Each brace costs: $9,000 ($18,000 for the two)
A Knee Section to stabilize one of my knees: $1,704
The total? $19,704
The travel costs ~ $2000
(I know, it’s staggering)
The good news: insurance can most likely cover the knee section ($1,704)
My parents have generously volunteered to cover travel expenses + ~$3500 towards the brace
I will have saved ~$7500 for the brace
That leaves ~$7,000 to raise! The extra $500 in the goal is to account for GoFundMe’s deducted percentage and any gap in savings. Any additional funds raised past the $7500 goal will be used to offset out of pocket costs.
Update: Through the generosity of 119 donors, $8,068 was raised in 13 days! Due to the incredible outpouring of support (there were/are more who'd like to donate!!) The goal has been extended to $9,000. If you are just finding my campaign now, welcome! I am so grateful for people like yourself who take the time to learn about and share my story, and cannot wait to get the Exosym without a worry n the world.
Right now, I plan to make the pilgrimage to Hanger in Washington in December, meaning I have to produce half of the required funds upon arrival in December, 2018, and the other half in June, 2019. We have some time, let’s do this! Thanks for reading, let’s share this puppy!! Don’t forget to check out the perks* for donating!
<3 Sonya
*A note on the perks- Everybody gets a thank you card! GoFundMe has a $5 minimum for perks, but no contribution is too small. If you choose to have a song written, Sonya will put you in touch with Ms. Corbus to start the adventure :)
My name is Sonya! I am a 20 year old theatre student-turned-case-manager living with mild Spastic Diplegia Cerebral Palsy. CP is a neuromuscular condition folks are born with that can affect one’s physical and cognitive abilities to varying degrees. For myself, it manifests physically in an altered gait, frequent falling, compromised stamina and energy, chronic pain, difficulty with steps, an intense startle reflex, and sub-par motor skills. Essentially, I’m not going to be the next American Ninja Warrior, and know what it means to manage pain. Why am I telling you this? A little over a year ago I discovered Hanger Clinic’s Exosym brace through a blog called Cerebral Palsy Strong (go check it out- it’s so cool! https://cerebralpalsystrong.com/). The Exosym is a revolutionary prosthetic-orthotic hybrid that is changing the game for people with lower limb issues- eliminating many of the symptoms I mentioned I deal with. I was hand picked as a candidate for this brace by creator Ryan Blanck, and for the first time ever, the possibility of a life without falls and the constant threat of pain is real for me. It seems too good to be true. The catch? It’s $20,000.
The Device-
About 5 years ago, Orthotist Ryan Blanck noticed a staggering number of leg amputations in his work with veterans. He knew there had to be a better way. Then in San Antonio, TX, Blanck drafted up the IDEO. Originally meant for the veteran population, the device eliminates lower limb pain by diverting energy or strain from injured or weak areas, and redirecting that energy to give wearers a “boost” as they walk. This is accomplished through a strut in the back of the brace that acts as a shock absorber. The IDEO is reported to have prevented over 100,000 lower limb amputations. See the early results of the Exosym here: https://www.youtube.com/watch?v=NhlTjC10oq4
As positive results continued, the need for the brace became evident, and Blanck relocated to Gig Harbor Washington to produce the device for the civilian population with Hanger Clinic, which is regarded as one of the most cutting edge facilities for orthotics and prosthetics in the country. The fitting of the brace is coupled with an intensive training regimen, ensuring that users get the most of their mobility while wearing the brace. The Exosym is set apart from typical AFO bracing (what I’ve been wearing for 18 years now, and am dependent on), in so much that it does not do the work for you to walk, but instead supports the muscle strength and movement you do have to push your function to its highest potential. In typical bracing, I lose all ankle motion and the movement of my dorsal and plantar (foot) muscles in exchange for increased strength and stability. As a result, my muscles have atrophied and my feet aren’t good for much without the brace. However in the Exosym, the minimalist design with the struts allows one to build muscle and increase range of motion while wearing the brace. As a result, it takes some working up to meet what the device requires, and so the training element is crucial.
Since the Exosym is only made in Gig Harbor, people with various physical challenges come from all over the world seeking the life changing, astonishingly consistent results. Here are some stories about the impact of the brace, that explain better than I can about how the device works:
Katy Fetters (CP Strong): https://www.facebook.com/cerebralpalsystrong/videos/1585557758160387/
Beth Shaver: https://www.youtube.com/watch?v=DYFIcGlW0w8
Hanger’s Info Video: https://www.youtube.com/watch?v=dlqel7udvEI&t=163s
Obviously for everyone the results are different, and I will be wearing TWO Exosym braces because my condition affects me on both sides (re: Diplegia). That said, all of the same improvements can be in my future, and I am ready to work hard.
The Patient-
Whooooooo is your donation helping? I have been told I am a spunky, thoughtful human being who does her best to do good. Growing up with CP was not easy. Born over three months premature alongside my twin, AJ, my moms had their hands full from day one. Despite bleak prognoses of not walking, talking, or attending mainstream school, I defied each dubious doc with intensive therapies, determination, tears, and optimism. By age four I was a chatterbox in pre-K, and at age 5 I was speeding down a soccer field in a little red walker. Early on, I grappled with big ideas like what it means to be disabled, equality in education, and my own independence. At age 8, I had my first operation- a release (snip and tug) of my left heel cord. With my family’s help, I got through it with flying colors. This was just a taste of what was yet to come.
As I grew older, I felt the pressure of wanting to fit in that comes with being a teenage girl. I packed my days with more, and pushed my changing joints and muscles to their limit. It was harder for me to find motivation for PT, and I was falling and hurting more. Then one day, a man approached my parents in a pumpkin patch, of all places. He said he was a Shriner and referred me Shriners Hospitals for Children because they “may be able to help me”. So, not knowing what to expect, my parents and I trecked out of state to see what the deal with Shriners was. Soon, I was getting a gait analysis to see exactly how I walked. Using the technology to make the blue people in Avatar, little microphones and cameras were put on my muscles to track the most minute of my inner workings. I walked and clinicians watched; measurements were taken.
The verdict? SIX operations. All or nothing. And time was ticking, because my growth plates were setting. I was 14 years old. After many a second opinion, I decided to go forward with the operation: my prognosis otherwise did not look good. I could lose much of my mobility by my mid twenties, and risk serious injuries and joint deterioration until then.
The 10 day hospital stay that followed is a blur, all of it spent in pain and medicated. Leaving the hospital was just the beginning of what was a two year recovery period, as I had a follow up operation the following spring. I enduring grueling pain and rehabilitation while in high school as I acclimated to my new legs. Seemingly constant appointments had me drifting between two worlds: the medical and the non-medical. I sported a walker for the first time in nearly 10 years my sophomore year in high school. I thought I would never regain a sense of normalcy again.
But then, when I was 17, things began to level out. I enjoyed all the excitement of senior year, looked forward to college, and was motivated to make a full length documentary on disability entitled The Souls of our Feet: http://thesoulsofourfeet.squarespace.com/.
By the time I turned 18 I was walking further, standing longer, and falling less than ever before.
I went to Boston to study theatre at a collegiate level. Though I saw improvement in my mobility post-op, independent living and a new city presented their own unique challenges. I continued to push myself and sustain injuries every so often, the most notable being a jaw contusion after literally falling face first into a door. Face injuries included, I enjoyed school, eventually finding my way to Phamaly theatre company in Denver, CO, the only professional company for disabled performers in the world.
In the safety of this community, I was forced to take a closer look at my mobility challenges and minority status. When I returned to school, the weight of both of those things sat heavily on me. So when my financial aid was cut the following summer, I was devastated, but believed taking some time off of school could be a good thing.
I decided to move to Denver semi-permanently, taking a job as a case manager in a program for people with disabilities experiencing homelessness, which complemented my interest in life with disability. It was during this transition that I explored wheelchair usage. Growing up, a wheelchair meant failure. But now 20, I was tired of being tired, and a wheelchair was the obvious solution if I couldn’t change my legs themself. I yearned for something like the Exosym, but could not imagine such an option. The wheelchair set my parents back $2200, not an easy ask. While the wheelchair is a helpful tool, it is glaring in it’s imperfections 6 months into usage. I can’t use it in rain or snow, over cracks or potholes, it is finicky in it’s joystick navigation, I have to be ever-aware of battery life, and there are the ever present realities of inaccessibility and chronic mobility loss.
Finding the Exosym and being approved for candidacy could not have come at a better time. But, with the financial impact of the wheelchair, ongoing maintenance costs of life with CP, and the looming expense of school, without your help it is not a reality for me despite months of hard work and saving. Simply put, ya girl doesn’t have $20,000.
The Logistics-
So that said, How am I going to get to Gig Harbor?
Each brace costs: $9,000 ($18,000 for the two)
A Knee Section to stabilize one of my knees: $1,704
The total? $19,704
The travel costs ~ $2000
(I know, it’s staggering)
The good news: insurance can most likely cover the knee section ($1,704)
My parents have generously volunteered to cover travel expenses + ~$3500 towards the brace
I will have saved ~$7500 for the brace
That leaves ~$7,000 to raise! The extra $500 in the goal is to account for GoFundMe’s deducted percentage and any gap in savings. Any additional funds raised past the $7500 goal will be used to offset out of pocket costs.
Update: Through the generosity of 119 donors, $8,068 was raised in 13 days! Due to the incredible outpouring of support (there were/are more who'd like to donate!!) The goal has been extended to $9,000. If you are just finding my campaign now, welcome! I am so grateful for people like yourself who take the time to learn about and share my story, and cannot wait to get the Exosym without a worry n the world.
Right now, I plan to make the pilgrimage to Hanger in Washington in December, meaning I have to produce half of the required funds upon arrival in December, 2018, and the other half in June, 2019. We have some time, let’s do this! Thanks for reading, let’s share this puppy!! Don’t forget to check out the perks* for donating!
<3 Sonya
*A note on the perks- Everybody gets a thank you card! GoFundMe has a $5 minimum for perks, but no contribution is too small. If you choose to have a song written, Sonya will put you in touch with Ms. Corbus to start the adventure :)
Organiser
Sonya Rio-Glick
Organiser
Denver, CO