This is my son, Jesse. He is an 11 year old boy who just started middle school and is a very important part of my family! Jesse has been living with a neuromuscular disorder all of his life. Its called CMT1E. He has never been able to walk on his own, but he uses special equipment to get around. For 11 years, Jesse has been faced with many challenges. Everyday, he must push himself to work much harder than most people in order to accomplish daily activities. Over the years, he has trained himself to face adversity head on. Three characteristics that I admire most in Jesse are BRAVERY, PERSEVERANCE, and KINDNESS! These strengths have brought him where he is today.
JESSE NEEDS TO STRAIGHTEN UP!
In addition to having CMT1E, he also battles an ever worsening case of scoliosis. This is why we are here!
Scoliosis is an abnormal curvature of the spine. Scoliosis becomes harder to treat as a person ages since the spine settles into it's curved form. The lack of motion creates contractures. Contractures sort of "lock" the bones and muscles and ligaments into a stagnant position. When a person is diagnosed with scoliosis, the curve of the spine is measured by doctors and , if the curve is great enough, a back brace is commonly prescribed. If the curve is even greater, often surgery is the next step. Scoliosis surgeries that have been considered for Jesse are having growing rods inserted to guide the spine, or spinal fusion which is a very invasive procedure that entails extensive hardware to be drilled into the spine to help correct the curve. These surgeries can result in loss of range of motion, nerve damage and pain, long recovery periods lasting up to a year, and the stop of any further growth. There is also the great possibility that the hardware can fail through time, calling for more surgeries down the line.
Jesse's current curvature is severe. It causes him pain every day. It is very difficult for him to sit in his chair at school as gravity tugs at his asymmetrical rib cage and his hips are no longer aligned leaving one hip raised too high to sit on. At the age of 11, Jesse's body is reaching major growth periods in his life. More growth can mean more curve. At a Cobb angle measuring 66 degrees, his spine is so curved that his organs and lung functionality are at risk. He needs relief from the pain. He needs to stop the curvature. He needs to STRAIGHTEN UP!
A NEW HOPE!!
Due to Jesse's already compromised nerves, and the fact that Jesse still has much growing to do, we have fought to find a non surgical answer for his scoliosis. Much to our surprise, we finally found a clinic only an hour away from us! It is called Scoliosis Care Center. (www.ScoliosisCareCenters.com) Here, they offer care and treatment for children with many types of scoliosis. When they met Jesse, they saw his spine, and all the other aspects of challenge he has in his life, and they offered a NEW HOPE!!
At Scoliosis Care Center, Jesse will be starting with a regimented physical program for 4 weeks. During that time, he will use special equipment to loosen contractures in his spine, which makes his spine more flexible. He will exercise to bolster his lung strength. He will use a flexibility trainer, a neuro -elongation table and be fitted for a daytime and nighttime brace, to mention a few of the things that he will be working on. He will come home with customized equipment after the initial 4 weeks where Jesse will continue to wear his bracing, exercise and stretch with the supplied equipment. This process supports a growing body and is non invasive. Scoliosis Care Center has a high percentage of success stories and we have great faith that Jesse's story will soon be added to that percentage!
What we need:
Scoliosis Care Center does not accept insurance. Insurance is part of a system that supports "inside the box" thinking. BUT, the PROOF is CLEAR! Scoliosis Care center uses methods proven to work!
It will cost us $30,000.00 to cover the first 4 weeks of on site treatment. Then we need to pay for the customized equipment that Jesse will use at home for the next several years. The list of equipment includes:
Scoliosis Flexibility trainer : $7,000.00
Scoliosis brace (one for night and one for day) : $6,500
Neuro- elongation table : $4,000.00
Furthermore, over the course of the next 2-4 years, Jesse's progress will be tracked quarterly with MRI scans and adjustments to his braces as well as any additional physical treatment seen necessary. To remain under the care of Scoliosis Care center, we will need to pay $1300.00 each month after the initial treatment. In conclusion, we need between $67,000 -$100,000 to see Jesse through to skeletal maturity.
We are able to cover the first $30,000 to kick off Jesse's healing! But, we need to keep the ball rolling as this is just getting us in the door. The next payments are due a month later. Jesse is in this for the long haul! He will have to commit to hard work every day and wear a brace in order to reshape his future. Please unite with us to see Jesse through these trying times. Time is of the essence and anything helps!
The Rich Family