Bent Not Broken-The Terrell's
Donation protected
Thank you for taking the time to read about our granddaughter’s journey. Debi & Larry
Bent Not Broken: The Terrell’s Curvy Road Through Scoliosis
DISCOVERY
In May of 2018, Charlee, our 10 year old daughter, had been complaining of pain between her shoulders off and on. My husband finally took a peek at her back, and voiced concern to me. He had her lift her shirt so I could see. Charlee’s back was to us and she was bending over slightly, but enough for us to see the shocking curve that looked back at us. She had just been screened for scoliosis the previous fall, so I knew a curve of this significance was a good indication that we had an aggressive form of a spine deformity on our hands.
Our hearts sunk.
TREATMENT
After meeting with the doctor and having initial X-rays, he confirmed what we already knew. Charlee had a 28 degree Cobb Angle and the traditional “S” curve pattern. They tested her lung capacity and I was shocked at how little air she could breathe in. Charlee had played basketball the winter before, and I noticed her shoulders pulled forward and she seemed to tire quickly, but of course never had scoliosis on my radar.
We had decisions to make. Typically, bracing occurs around the 20 degree mark. We had to make decisions on treatments very quickly as we we were up against the clock of needing to do a full spinal fusion.
We knew how difficult bracing would be-both emotionally and physically-and wanted to see how her body responded to intensive therapy before going that route, so we decided we would try a summer of intensive physical therapy geared towards the treatment of scoliosis. A “boot camp” approach to try and stop the progression.
In a matter of days, we converted our basement into a therapy room. Jim drove down and back to Amarillo, TX in a days time to purchase a special scoliosis chair, complete with ratchet straps and weights.
Charlee was told not to jump on a trampoline, do sports, swim, bowl, or do anything that would create stress on her spine. It was a very difficult summer for her emotionally. Although scoliosis isn’t life threatening, it is life altering. We barely navigated through very difficult days and nights. We spent 2-3 hours at physical therapy 3 times a week her entire summer. On the days she didn’t go to PT, she spent 1-2 hours a day doing therapy at home.
At the end of the summer (in August), she had more X-ray’s. Charlee’s curve had progressed to 40 degrees, already making her a candidate for spine surgery. Our hearts were so heavy. She had worked so hard, but the scoliosis was progressing like a freight train.
PAIN
Charlee’s pain over the summer increased and headaches started getting more intense and more often. I was hoping it was due to her back correcting or fighting hard to stay put. Charlee was born with 1 kidney and has a history of seizures, so we are very careful about what types of medications we give her. It took some experimenting, but we were able to find some natural alternatives to help manage her pain.
Science has not yet discovered the exact cause of idiopathic adolescent scoliosis. There are multiple theories, but more research needs to be done. However, I knew we could address some of the theories, such as Lymes or retroviruses, naturally. We began working with a doctor in the UK on supporting Charlee from a holistic view. She mapped out specific supplements to get Charlee started on.
BRACING
All summer I had been reading about different types of braces to treat scoliosis. Although Charlee was already a candidate for surgery, I felt very strongly that we should continue to pursue more conservative approaches and do all we could before going that route. I read about Europe’s treatments and bracing. In August, I learned about Schroth Therapy and Rigo-Chenneau braces.
Rigo-System Chenneau (RSC) braces are considered “HYPER CORRECTIVE”. In other words, they don’t just stop the progression, but in many cases can actually REVERSE the curvature. This type of brace has loads of medical research articles showing amazing results, especially when used with a specific type of therapy called SCHROTH.
Dr. Manuel Rigo is the inventor of the Rigo-Cheneau bracing system. This brace and Schroth Physiotherapy follows the same, 3 dimensional principles and is helping pre-teens and teens around the World to stop scoliosis curve progression, to avoid surgery, and to improve the condition. The primary goals are to change the scoliotic posture in 3D, improve lung capacity, and educate and treat the patients individually for their needs. Schroth Physiotherapy is safe for larger scoliotic curves, even before and after surgery.
Charlee was presenting with signs of Kyphosis as well, so this 3D approach from both the brace AND the therapy was looking more and more like the route we needed to take.
There was one problem…no one in the midwest offered this type of brace. I began a nation wide search for providers who used the RSC brace. I called countless Children’s Hospitals, Shriners, the Mayo Clinics and Chiropractors. We had to find not only an orthopedic surgeon who offered this hyper-corrective brace, but also an orthotist who worked with the doctor who made them. Finding the right orthopedic surgeon who matched our conservative “preventive” mindset was challenging…
But we did. In Manhattan, NY. And a Schroth clinic in Overland Park, KS!
The Center For Conservative Care for Spine and Scoliosis is located in the Morgan Stanley Children’s Hospital right in the heart of NYC. Knowing how difficult it can be to get into specialty clinics, I immediately called and made an appointment in October of 2018.
NYC OR BUST!
In October, our first trip to NYC was crazy stressful and at times quite humorous. Charlee was sized for her brace with a 3D scanner.
We went back to NYC the last week of November and she had her first fitting and we flew home with her brace. In God’s great provision, the $8,500 brace was covered by insurance and we are still working out the exact amount we have to pay, but as of now it looks like $550.
In January, we went to NYC a 3rd time for her first “in-brace” X-ray. In brace, her curve went from 40 degrees, to 28 degrees. I was hoping for a more correction, but am submitted to the process. Her next appointment is in June.
CORRECTION
Charlee is required to wear her brace as close to 24 hours as possible. She takes it off when eating and doing therapy, and typically about an hour break after school. She is very brave. My daughter is at a very tender age, and up to this point we have been very protective by not sharing too much. She has slowly accepted this diagnosis, and we have followed her pace. At school and public places she chooses to wear her brace on the outside of her clothes. At church and in situations where other unfamiliar children are present, she will choose to wear it under her clothes, but it isn’t as comfortable. We have navigated through rashes and bruised ribs from coughing, but slowly we are learning how to keep her as comfortable as possible. By far, the hardest time is at night when she goes to bed and during her therapy sessions.
LOOKING FORWARD
Charlee and I will return to NYC in June. At that appointment, they will do the first “out of brace” X-ray. She will be required to take her brace off the night before her appointment, giving the spine time to “settle”. She will get a series of EOS x-rays (extremely low radiation) and then we will re-assess.
There is potential she could need 1 brace per year, as she will outgrow them. Before her growth spurt is over, we will need to make the hard decision of surgery or no surgery. Charlee is 10 years old, so I hope we have a couple of years before being forced to make that decision. Statistically speaking, due to her young age, we are looking at surgery. But statistics don’t consider God! (we know many success stories from surgery, but we also know many struggles).
It has also been recommended for us to do some genetic testing to rule out more serious diseases such as some kind of Connective Tissue Disorder. Our appointment is set for May 17th at Children’s Mercy Hospital. Results can take as long as 6 weeks. If she were to test positive for a Connective Tissue Disorder, her brother and both Jim and I will also need to be tested. We are unsure at this time if insurance will help cover the cost.
Current Known EXPENSES:
NYC: $1,000/per trip for airline tickets, hotel and food. We have gone 3 times. We have 2 more trips this year, and 2-3 trips each additional year while she is being braced. (we suspect bracing for the next 4 years). $8,000-$12,000
BRACE: $550 per brace (insurance is covering the rest). We suspect she will need 3-4. $1,650-$2,400
THERAPY: $2,500 for summer of 2018-paid with the help of generous family and friends.
Schroth Therapy: Up until the time of typing this, we have paid $48-$75 each session with the help of insurance. $400
Unfortunately, our insurance is refusing to cover after the week of March 3rd, and the price will go up to $120 per session. We are going twice a week. Amount of therapy sessions needed are currently not known. At this point, we have at LEAST 6 more weeks. She will then go down to a “maintenance” program, amount per month still TBD. $1,440
THERAPY EQUIPMENT: about $350. (Thankfully we were able to sell the scoliosis chair we purchased in Amarillo!)
Misc Expenses:
New Mattress/Pillow: $400
New Clothing that is compatible with brace: ongoing expense as she grows. We have spent about $200 already.
NOT INCLUDED: monthly cost of supplements, genetic testing, counseling, copays, etc.
Minimum Goal: $10,000-$15,000
IF WE EXCEED OUR GOAL-CHARITIES:
Depending on amount, we would like to split our donations between 2 organizations:
1. Charlee’s pick: KC Pet Project (www.kcpetproject.org)
2. Jim and Misty’s pick: Harvest Home/Our Father’s Farm (www.harvesthome.org)
Harvest Home purchased Our Father’s Farm in 2007. This beautiful 347-acre farm is dedicated to helping women and children who have been sexually abused and/or rescued from sex trafficking. These precious girls receive personal God encounter sessions, equine ministry, creative art, music, dance and lots of tender, loving care by very dedicated staff.
OUR PLAN OF ACTION (and full transparency):
1. Liquidate: we are selling EVERYTHING we can get rid of. We currently have my 1974 VW bus for sale which would help tremendously. However, she is currently not drivable and we are trying to get her back to “daily driving” condition. It could require up to $3,000 to fix. This is a work in progress but at the top of our list. We are selling our Pop Up Camper this spring, and a little fishing boat. I have gone through every single closet and drawer and am part of a large consignment sale at a church.
2. Part Time Jobs and Full Time Jobs: I am taking photography clients on evenings and weekends. I own a small cleaning business and manage 5 employees and sell product. I have continued doing both jobs on top of my full time 4th grade teaching position. Jim (my husband) has picked up evening and weekend shifts at the National Weather Service, as well as holidays. We have been and will continue to be willing to put in the sweat equity.
3. Thrifty Spending: We try our best to be good stewards of our money. (there is always room for improvement) We are thrift store junkies and try to reduce, reuse, and recycle. We are very particular about doing out best NOT to spend outside of our current needs.
4. Dave Ramsey Baby Steps: We have entirely skipped step 1 (emergency fund) and are on Step 2. (knocking out debt). Even with us both working extra jobs/shifts, the expenses coming in far outweigh what we are physically able to keep up with.
5. Fundraisers: Parents of the students in my class (and another teacher) are putting together a fundraiser for us in March. I am selling many of our belongings in a consignment sale in April. It was suggested months ago to start a GoFundMe page. At the time, it didn’t feel right. My desire to protect Charlee’s privacy, and my struggle with accepting money from our loved ones felt wrong. However, we have been incredibly blessed with strong community and the most precious of friends and loved ones. So many have been asking how they can help, and here we are. Depending on the outcome of all of the above, we will add more fundraisers as needs arrive. We do not expect handouts. Please note: we will also continue to do OUR part to minimize the need for fundraising such as this. With proper budgeting and some sweat equity, we will do our best to contribute as much as we can.
HOW YOU CAN HELP: pray, partner or both
1. Pray for Charlee. We humbly ask, would you please pray complete healing over our daughter? Would you pray for her spirit? Would you pray endurance? Thank you.
2. Pray for Jim and Misty. Would you pray God’s provision? Would you pray that we can trust Jesus? Would you pray wisdom for us as Charlee asks us those tough life questions? Thank you. Her hardest times emotionally are during therapy sessions and at bedtime.
3. Partner: In humility we come before you saying…”We need help”. If you feel connected to our story and would like to do more, thank you!
4. RESPECT: Charlee is at a very tender age, and we are trying our best to keep her knowledge of our financial stress to a minimum. We are not including her in details of our finances, although she knows to a certain degree. We want her to be somewhat aware so she can be a part of God’s miraculous work in our family, yet still protect her so she doesn’t take on our worries or feel guilt. Thank you for understanding.
OUR SINCERE GRATITUDE:
How does one say thank you in such a way that properly conveys the depth of emotions? This has been a very difficult road, and any prayer/help/assistance is beyond meaningful to us.
Some have already given and it has meant the WORLD to us. Many of you have been and are praying. Thank you. Our desire is to PAY IT FORWARD and live in FREEDOM. We know debt is not God’s desire for us. If you feel led to help us achieve our goal of financial freedom and to help Charlee get the best care, whether it be $5 or $500, your gift will not be taken lightly.
As one of my 4th grade students shouted after hearing how well her brace is working…”Take THAT, Scoliosis!” God is good. All the time. No matter what. Our faith has deepened, not shaken.
Thank you kindly and may God bless you,
Misty & Jim Terrell
Isaiah 58:11 “I will always show you where to go. I’ll give you a full life in the emptiest of places— firm muscles, strong bones. You’ll be like a well-watered garden, a gurgling spring that never runs dry.”
Bent Not Broken: The Terrell’s Curvy Road Through Scoliosis
DISCOVERY
In May of 2018, Charlee, our 10 year old daughter, had been complaining of pain between her shoulders off and on. My husband finally took a peek at her back, and voiced concern to me. He had her lift her shirt so I could see. Charlee’s back was to us and she was bending over slightly, but enough for us to see the shocking curve that looked back at us. She had just been screened for scoliosis the previous fall, so I knew a curve of this significance was a good indication that we had an aggressive form of a spine deformity on our hands.
Our hearts sunk.
TREATMENT
After meeting with the doctor and having initial X-rays, he confirmed what we already knew. Charlee had a 28 degree Cobb Angle and the traditional “S” curve pattern. They tested her lung capacity and I was shocked at how little air she could breathe in. Charlee had played basketball the winter before, and I noticed her shoulders pulled forward and she seemed to tire quickly, but of course never had scoliosis on my radar.
We had decisions to make. Typically, bracing occurs around the 20 degree mark. We had to make decisions on treatments very quickly as we we were up against the clock of needing to do a full spinal fusion.
We knew how difficult bracing would be-both emotionally and physically-and wanted to see how her body responded to intensive therapy before going that route, so we decided we would try a summer of intensive physical therapy geared towards the treatment of scoliosis. A “boot camp” approach to try and stop the progression.
In a matter of days, we converted our basement into a therapy room. Jim drove down and back to Amarillo, TX in a days time to purchase a special scoliosis chair, complete with ratchet straps and weights.
Charlee was told not to jump on a trampoline, do sports, swim, bowl, or do anything that would create stress on her spine. It was a very difficult summer for her emotionally. Although scoliosis isn’t life threatening, it is life altering. We barely navigated through very difficult days and nights. We spent 2-3 hours at physical therapy 3 times a week her entire summer. On the days she didn’t go to PT, she spent 1-2 hours a day doing therapy at home.
At the end of the summer (in August), she had more X-ray’s. Charlee’s curve had progressed to 40 degrees, already making her a candidate for spine surgery. Our hearts were so heavy. She had worked so hard, but the scoliosis was progressing like a freight train.
PAIN
Charlee’s pain over the summer increased and headaches started getting more intense and more often. I was hoping it was due to her back correcting or fighting hard to stay put. Charlee was born with 1 kidney and has a history of seizures, so we are very careful about what types of medications we give her. It took some experimenting, but we were able to find some natural alternatives to help manage her pain.
Science has not yet discovered the exact cause of idiopathic adolescent scoliosis. There are multiple theories, but more research needs to be done. However, I knew we could address some of the theories, such as Lymes or retroviruses, naturally. We began working with a doctor in the UK on supporting Charlee from a holistic view. She mapped out specific supplements to get Charlee started on.
BRACING
All summer I had been reading about different types of braces to treat scoliosis. Although Charlee was already a candidate for surgery, I felt very strongly that we should continue to pursue more conservative approaches and do all we could before going that route. I read about Europe’s treatments and bracing. In August, I learned about Schroth Therapy and Rigo-Chenneau braces.
Rigo-System Chenneau (RSC) braces are considered “HYPER CORRECTIVE”. In other words, they don’t just stop the progression, but in many cases can actually REVERSE the curvature. This type of brace has loads of medical research articles showing amazing results, especially when used with a specific type of therapy called SCHROTH.
Dr. Manuel Rigo is the inventor of the Rigo-Cheneau bracing system. This brace and Schroth Physiotherapy follows the same, 3 dimensional principles and is helping pre-teens and teens around the World to stop scoliosis curve progression, to avoid surgery, and to improve the condition. The primary goals are to change the scoliotic posture in 3D, improve lung capacity, and educate and treat the patients individually for their needs. Schroth Physiotherapy is safe for larger scoliotic curves, even before and after surgery.
Charlee was presenting with signs of Kyphosis as well, so this 3D approach from both the brace AND the therapy was looking more and more like the route we needed to take.
There was one problem…no one in the midwest offered this type of brace. I began a nation wide search for providers who used the RSC brace. I called countless Children’s Hospitals, Shriners, the Mayo Clinics and Chiropractors. We had to find not only an orthopedic surgeon who offered this hyper-corrective brace, but also an orthotist who worked with the doctor who made them. Finding the right orthopedic surgeon who matched our conservative “preventive” mindset was challenging…
But we did. In Manhattan, NY. And a Schroth clinic in Overland Park, KS!
The Center For Conservative Care for Spine and Scoliosis is located in the Morgan Stanley Children’s Hospital right in the heart of NYC. Knowing how difficult it can be to get into specialty clinics, I immediately called and made an appointment in October of 2018.
NYC OR BUST!
In October, our first trip to NYC was crazy stressful and at times quite humorous. Charlee was sized for her brace with a 3D scanner.
We went back to NYC the last week of November and she had her first fitting and we flew home with her brace. In God’s great provision, the $8,500 brace was covered by insurance and we are still working out the exact amount we have to pay, but as of now it looks like $550.
In January, we went to NYC a 3rd time for her first “in-brace” X-ray. In brace, her curve went from 40 degrees, to 28 degrees. I was hoping for a more correction, but am submitted to the process. Her next appointment is in June.
CORRECTION
Charlee is required to wear her brace as close to 24 hours as possible. She takes it off when eating and doing therapy, and typically about an hour break after school. She is very brave. My daughter is at a very tender age, and up to this point we have been very protective by not sharing too much. She has slowly accepted this diagnosis, and we have followed her pace. At school and public places she chooses to wear her brace on the outside of her clothes. At church and in situations where other unfamiliar children are present, she will choose to wear it under her clothes, but it isn’t as comfortable. We have navigated through rashes and bruised ribs from coughing, but slowly we are learning how to keep her as comfortable as possible. By far, the hardest time is at night when she goes to bed and during her therapy sessions.
LOOKING FORWARD
Charlee and I will return to NYC in June. At that appointment, they will do the first “out of brace” X-ray. She will be required to take her brace off the night before her appointment, giving the spine time to “settle”. She will get a series of EOS x-rays (extremely low radiation) and then we will re-assess.
There is potential she could need 1 brace per year, as she will outgrow them. Before her growth spurt is over, we will need to make the hard decision of surgery or no surgery. Charlee is 10 years old, so I hope we have a couple of years before being forced to make that decision. Statistically speaking, due to her young age, we are looking at surgery. But statistics don’t consider God! (we know many success stories from surgery, but we also know many struggles).
It has also been recommended for us to do some genetic testing to rule out more serious diseases such as some kind of Connective Tissue Disorder. Our appointment is set for May 17th at Children’s Mercy Hospital. Results can take as long as 6 weeks. If she were to test positive for a Connective Tissue Disorder, her brother and both Jim and I will also need to be tested. We are unsure at this time if insurance will help cover the cost.
Current Known EXPENSES:
NYC: $1,000/per trip for airline tickets, hotel and food. We have gone 3 times. We have 2 more trips this year, and 2-3 trips each additional year while she is being braced. (we suspect bracing for the next 4 years). $8,000-$12,000
BRACE: $550 per brace (insurance is covering the rest). We suspect she will need 3-4. $1,650-$2,400
THERAPY: $2,500 for summer of 2018-paid with the help of generous family and friends.
Schroth Therapy: Up until the time of typing this, we have paid $48-$75 each session with the help of insurance. $400
Unfortunately, our insurance is refusing to cover after the week of March 3rd, and the price will go up to $120 per session. We are going twice a week. Amount of therapy sessions needed are currently not known. At this point, we have at LEAST 6 more weeks. She will then go down to a “maintenance” program, amount per month still TBD. $1,440
THERAPY EQUIPMENT: about $350. (Thankfully we were able to sell the scoliosis chair we purchased in Amarillo!)
Misc Expenses:
New Mattress/Pillow: $400
New Clothing that is compatible with brace: ongoing expense as she grows. We have spent about $200 already.
NOT INCLUDED: monthly cost of supplements, genetic testing, counseling, copays, etc.
Minimum Goal: $10,000-$15,000
IF WE EXCEED OUR GOAL-CHARITIES:
Depending on amount, we would like to split our donations between 2 organizations:
1. Charlee’s pick: KC Pet Project (www.kcpetproject.org)
2. Jim and Misty’s pick: Harvest Home/Our Father’s Farm (www.harvesthome.org)
Harvest Home purchased Our Father’s Farm in 2007. This beautiful 347-acre farm is dedicated to helping women and children who have been sexually abused and/or rescued from sex trafficking. These precious girls receive personal God encounter sessions, equine ministry, creative art, music, dance and lots of tender, loving care by very dedicated staff.
OUR PLAN OF ACTION (and full transparency):
1. Liquidate: we are selling EVERYTHING we can get rid of. We currently have my 1974 VW bus for sale which would help tremendously. However, she is currently not drivable and we are trying to get her back to “daily driving” condition. It could require up to $3,000 to fix. This is a work in progress but at the top of our list. We are selling our Pop Up Camper this spring, and a little fishing boat. I have gone through every single closet and drawer and am part of a large consignment sale at a church.
2. Part Time Jobs and Full Time Jobs: I am taking photography clients on evenings and weekends. I own a small cleaning business and manage 5 employees and sell product. I have continued doing both jobs on top of my full time 4th grade teaching position. Jim (my husband) has picked up evening and weekend shifts at the National Weather Service, as well as holidays. We have been and will continue to be willing to put in the sweat equity.
3. Thrifty Spending: We try our best to be good stewards of our money. (there is always room for improvement) We are thrift store junkies and try to reduce, reuse, and recycle. We are very particular about doing out best NOT to spend outside of our current needs.
4. Dave Ramsey Baby Steps: We have entirely skipped step 1 (emergency fund) and are on Step 2. (knocking out debt). Even with us both working extra jobs/shifts, the expenses coming in far outweigh what we are physically able to keep up with.
5. Fundraisers: Parents of the students in my class (and another teacher) are putting together a fundraiser for us in March. I am selling many of our belongings in a consignment sale in April. It was suggested months ago to start a GoFundMe page. At the time, it didn’t feel right. My desire to protect Charlee’s privacy, and my struggle with accepting money from our loved ones felt wrong. However, we have been incredibly blessed with strong community and the most precious of friends and loved ones. So many have been asking how they can help, and here we are. Depending on the outcome of all of the above, we will add more fundraisers as needs arrive. We do not expect handouts. Please note: we will also continue to do OUR part to minimize the need for fundraising such as this. With proper budgeting and some sweat equity, we will do our best to contribute as much as we can.
HOW YOU CAN HELP: pray, partner or both
1. Pray for Charlee. We humbly ask, would you please pray complete healing over our daughter? Would you pray for her spirit? Would you pray endurance? Thank you.
2. Pray for Jim and Misty. Would you pray God’s provision? Would you pray that we can trust Jesus? Would you pray wisdom for us as Charlee asks us those tough life questions? Thank you. Her hardest times emotionally are during therapy sessions and at bedtime.
3. Partner: In humility we come before you saying…”We need help”. If you feel connected to our story and would like to do more, thank you!
4. RESPECT: Charlee is at a very tender age, and we are trying our best to keep her knowledge of our financial stress to a minimum. We are not including her in details of our finances, although she knows to a certain degree. We want her to be somewhat aware so she can be a part of God’s miraculous work in our family, yet still protect her so she doesn’t take on our worries or feel guilt. Thank you for understanding.
OUR SINCERE GRATITUDE:
How does one say thank you in such a way that properly conveys the depth of emotions? This has been a very difficult road, and any prayer/help/assistance is beyond meaningful to us.
Some have already given and it has meant the WORLD to us. Many of you have been and are praying. Thank you. Our desire is to PAY IT FORWARD and live in FREEDOM. We know debt is not God’s desire for us. If you feel led to help us achieve our goal of financial freedom and to help Charlee get the best care, whether it be $5 or $500, your gift will not be taken lightly.
As one of my 4th grade students shouted after hearing how well her brace is working…”Take THAT, Scoliosis!” God is good. All the time. No matter what. Our faith has deepened, not shaken.
Thank you kindly and may God bless you,
Misty & Jim Terrell
Isaiah 58:11 “I will always show you where to go. I’ll give you a full life in the emptiest of places— firm muscles, strong bones. You’ll be like a well-watered garden, a gurgling spring that never runs dry.”
Organizer and beneficiary
Debi Thomas Carter
Organizer
Lee's Summit, MO
Misty Terrell
Beneficiary