Our Story 2017-02-08T12:36:17+00:00

Our Story

I was diagnosed with scoliosis when I was still a child, almost 10 years old. Originally it was barely there, at less than 20 degrees, so the doctors didn’t think much of it and said they would monitor it to see if it would progress or not. And that’s exactly what it did, progress. Slowly at first, but then as I hit puberty it became apparent this was becoming a real problem.

Doctors decided to try bracing. Unfortunately within the year of trying to brace me I happened to grow 6 inches resulting in none of the braces working because I was rapidly growing and curving. With that rapid growth spurt came my severe diagnosis. My spine had managed to outgrow the rest of my structure and formed into Kyphosis and Lordosis.

Lordosis is when the spine of the person affected curves severely inwards at the lower back, resulting in an outward torso. Kyphosis scoliosis is a musculoskeletal disorder that often leads to other issues in patients, such as under-ventilation of lungs due to the ribs pulling and pushing, pulmonary hypertension, digestive issues, and difficulty in performing normal day-to-day activities. It also creates a cosmetic appearance of the person affected as having a camels “hump”. Because the vertebrae in the spine twist different directions, the rib cage on both sides becomes completely uneven, resulting in one side of the rib cage sticking out from the back and the other side protruding from the front.

My rib cage was so severely deformed that I was forced to walk out in public wearing extra large sweatshirts to hide the deformity, keep an inhaler on me at all times, and use a breathing machine at nighttime to open up my airways.

After years of having my disease progress to a point that it was causing internal damage, I finally had corrective surgery at Shriners Hospital in Sacramento on January 27th 2007. I was 15 years old at the time. My spine was completely restructured with 2 rods going all the way down my spinal column. I had such a bad curvature that they removed half of my right hip bone to use as bone graft for the fusion of 13 vertebrae in my spine, leaving me with little motion but cosmetically a brand new beautiful normal back.

Because of the fusion, I had to stay longer in the hospital than most children do. My hospital stay ended up being a month long in total. Life after surgery consisted of learning basic everyday skills such as walking and holding my head up. I lost a significant amount of muscle control in my body from being bed ridden for most of my stay at Shriners. It took 6 months of wearing a front-to-back brace after surgery for 22 hours a day before I was able to lead a somewhat normal life. In total, a 2 year full recovery. Today, I’m 10 years post-op with a fully functioning healthy titanium steel spine.

The whole entire reason I have created this nonprofit is to get people the financial help they need to seek treatment. I was lucky to get to the front of the line with Shriners because I had family members involved with the hospital itself. Many children aren’t so lucky. The amount of cases that pop up every year seem to only be piling onto the waiting lists for treatment, some hospitals in the U.S having waiting lists as long as a 2 year waiting period.

For many with this crippling disease time is of the essence and every case is sensitive because you never know how fast it will progress. Many children end up being denied completely because their insurance doesn’t cover the cost of surgery let alone the preventative brace worn beforehand. My goal is to make the option of treatment readily available to children with severe cases who are in low income households and/or without health insurance. I hope that reading my story and seeing the effects of this misunderstood disease on a child will bring light to how many people really do need help. This is a time sensitive disease.

Our Story

I was diagnosed with scoliosis when I was still a child, almost 10 years old. Originally it was barely there, at less than 20 degrees, so the doctors didn’t think much of it and said they would monitor it to see if it would progress or not. And that’s exactly what it did, progress. Slowly at first, but then as I hit puberty it became apparent this was becoming a real problem.

Doctors decided to try bracing. Unfortunately within the year of trying to brace me I happened to grow 6 inches resulting in none of the braces working because I was rapidly growing and curving. With that rapid growth spurt came my severe diagnosis. My spine had managed to outgrow the rest of my structure and formed into Kyphosis and Lordosis.

Lordosis is when the spine of the person affected curves severely inwards at the lower back, resulting in an outward torso. Kyphosis scoliosis is a musculoskeletal disorder that often leads to other issues in patients, such as under-ventilation of lungs due to the ribs pulling and pushing, pulmonary hypertension, digestive issues, and difficulty in performing normal day-to-day activities. It also creates a cosmetic appearance of the person affected as having a camels “hump”. Because the vertebrae in the spine twist different directions, the rib cage on both sides becomes completely uneven, resulting in one side of the rib cage sticking out from the back and the other side protruding from the front.

My rib cage was so severely deformed that I was forced to walk out in public wearing extra large sweatshirts to hide the deformity, keep an inhaler on me at all times, and use a breathing machine at nighttime to open up my airways.

After years of having my disease progress to a point that it was causing internal damage, I finally had corrective surgery at Shriners Hospital in Sacramento on January 27th 2007. I was 15 years old at the time. My spine was completely restructured with 2 rods going all the way down my spinal column. I had such a bad curvature that they removed half of my right hip bone to use as bone graft for the fusion of 13 vertebrae in my spine, leaving me with little motion but cosmetically a brand new beautiful normal back.

Because of the fusion, I had to stay longer in the hospital than most children do. My hospital stay ended up being a month long in total. Life after surgery consisted of learning basic everyday skills such as walking and holding my head up. I lost a significant amount of muscle control in my body from being bed ridden for most of my stay at Shriners. It took 6 months of wearing a front-to-back brace after surgery for 22 hours a day before I was able to lead a somewhat normal life. In total, a 2 year full recovery. Today, I’m 10 years post-op with a fully functioning healthy titanium steel spine.

The whole entire reason I have created this nonprofit is to get people the financial help they need to seek treatment. I was lucky to get to the front of the line with Shriners because I had family members involved with the hospital itself. Many children aren’t so lucky. The amount of cases that pop up every year seem to only be piling onto the waiting lists for treatment, some hospitals in the U.S having waiting lists as long as a 2 year waiting period.

For many with this crippling disease time is of the essence and every case is sensitive because you never know how fast it will progress. Many children end up being denied completely because their insurance doesn’t cover the cost of surgery let alone the preventative brace worn beforehand. My goal is to make the option of treatment readily available to children with severe cases who are in low income households and/or without health insurance. I hope that reading my story and seeing the effects of this misunderstood disease on a child will bring light to how many people really do need help. This is a time sensitive disease.