Jenny's SDR surgery for cerebral palsy
Donation protected
Hi my name is Jenny. Im 35 yrs old. I was born 2 months premature. I had to be in the NICU for 2 months. I weighed 4lbs 5oz. The doctor told my parents I might not live because when I was born, I had my umbilical cord around my neck and I was blue and purple all over my body. I was not breathing and my mom didn't here me cry like the normal baby cry after birth. In the hospital after I was born and had alot of tests the doctor came and told my parents I had lack of oxygen to the brain and bleeding on my brain. I also had jaundice. The hospital in Waukegan Illinois had to rush me to the Children's Hospital (Shriners) in Chicago Illinois for better care. I was in an incubator for the jaundice. 
2 months from being in the NICU the doctor said I was healty. The doctor told my parents that they could take me home soon but they had to be careful not to let me get sick. 
When I was 3 months old my parents noticed some things about me that were not right with my developement. At 6 months old the pediatrician told my parents to take me to a Neurologist to do more tests because there were some developmental concerns with physical movement and how my sight was that I only saw things moving and light/dark at that age. 
The tests at the Neurologist showed that I had brain damage and Cerebral Palsy was a possibility that there could be a chance I may not walk. The tests that I had done when I was a baby also showed that I have other condition.
Nystagmus - nystagmus is a central nervous system condition that causes the eyes to shake uncontrollably. Often known as dancing eyes. That affects a person's Vision because the world is always moving With their eyes shaking all the time makes it hard to focus and concentrate on things it also is a social problem because you cant make eye contact.
Astigmatism - astigmatism is mis shaping of the cornea causing visual impairment that effects vision.
Optic Nerve Hypoplasia - is where the optic nerves are undeveloped not letting the signal from the eyes get to the brain correctly causing a person not see 20/20 vision.
Clonus - is a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions involving motor pathways, and in many cases is accompanied by spasticity.
The Neurologist said I was legally blind until the age of 3. After a lot of vision therapy my eyes got a little better. At 1 years old I was diagnosed with Spastic Diplegia Cerebral Palsy.
Cerebral Palsy - affects body movement, muscle control, muscle coordination, muscle tone, reflex posture, and balance. I also have alot of falls. The list is endless compared to what the average person does not think about and experience.
My feet hurt all the time because spasticity that makes my muscles tighten up causes me to walk on my toes and I get blisters and calluses.
My back hurts everyday because the spasticity makes my hamstrings tight causing my back pain and stiffness and its hard to pick anything up off the floor. My condition makes me very tired because I have to use twice as much energy than the average person to get around. The cold weather makes my legs stiff in the winter. Cerebral Palsy restrict the movement of my legs to do simple things like getting in and out of the bath tub and sitting on the floor. I have developed problems because of the spasticity caused by Cerebral Palsy I have bone spurs in my hips.
and I have mild scoliosis.
Cerebral Palsy causes premature aging and causes a lot of pain. After this surgery, when the spasticity is gone I will no longer have clonus and my muscles will be relaxed for the first time in my life. (I have learning disabilities through high school) and was in special education.
After everything I have been through my whole life I was always a strong person and determined to try everything I wanted to and challenged myself always to do better. I learned how to ride a bike,
swim, and be as independent as I could with intensive physical therapy from when I was a baby until the age I am now.
I continue the physical therapy today because that will help me maintain my strength before surgery.
I got accepted to get this life changing surgery on December 17, 2018 In St Louis MO.
 The surgery is called. (SDR) selective dorsal rhizotomy followed by a second surgery called PERCS 6 to 12 month after SDR.
PERCS - is a minimally invasive procedure to lengthen my hamstrings, achilles tendons, and calf muscles from spasticity that caused them to be shorter then they should for my feet to stay flat on the ground when I walk and my knees to be straight when walking and to move normally. when my muscles get the PERCS surgery I will grow 1 - 3 inches. The surgeries are with Doctor TS
Parks in St. Louis MO.
SDR surgery is a very complicated surgery and you have to meet the criteria to be a good canidate. Adults have a limited criteria than children. I'm so grateful to be excepted for surgery. There are only a few doctors in the world that do the surgery. Doctor TS. Parks is the best at this surgery. He has patients from all 50 states and 70 countries that come and have SDR.
SDR is about 4 hour long. selective dorsal rhizotomy Is preformed by making an incision in the spine and they remove a vertebra to get to the nerves in the spine and separate the nerve roots into rootlets and test each nerve with EMG to see which ones have spasticity in them. Then the spastic ones are cut and all spastic nerves that is caused by spasticity that is the Palsy in Cerebral Palsy will be removed permanently out of my legs which will cause me to feel what its like to be spasticity free and be able to feel less or no pain. I'll be able to stretch my legs farther than I've ever been able to in life, I will get to feel whats it is like to move my ankles and toes for the 1st time ever and reverse and stop the premature aging process caused the spasticity. spasticity causes the spastc muscles to put pressure on the bones that causes them to get damaged from spasticity and have less to no future orthopedic surgeries because of the permanent removal of spasticit
This surgery comes with endless new Improvement and progress that is guaranteed to make me feel like a new person. Doctor Parks told me it will make me feel younger. It will also make me more confident and have a better quality of life so I can be able to be independent and not to use a wheelchair(by 50 yrs old). I will get to do things I used to do again that I stopped doing like roller skating and riding a bike and try new things. I refuse to let Cerebral Palsy try to take away my independence of my life and selective dorsal rhizotomy is the only surgery to improve Cerebral Palsy and remove spasticity permanently rather than having endless temporary treatments like Botox and Baclofen that in time are actually harmful and time consuming. I will have the comfort that I will not be a burden to anyone when I get older because if spasticity is in my body any longer my body will get worse and I won't get the opportunity for SDR.
The surgery has its expenses: traveling to/from St. Louis, and at home for months,
SDR surgery 7 days 3 days for each follow up at 4 - 24 months,
gas, bus ect.
food for breakfast, lunch, dinner,
hotel for my helpers (NOT FAMILY) to stay,
Exercise equipment:
Viberation plate-$400
balance board
stretch straps
stretch bands
ankle weights
arm weights
new foot wear doctor (recommend)
heating pads
grabber - no bending for 6 weeks
exercise ball-coar and balance
yoga mat for cushion/sturdiness
adaptive adult tricycle (not covered by insurance)
personal trainer is recommended $75 per week at a local gym with gym $45 per month mentorship together with physical therapy and occupational therapy for 2 yrs to build strength.
St. Louis phisical/Occupational therapy $1,500 for two week (each surgery)$3,000 for program Etc.
expenses for people that help for two years.
For each post-op visit the people who help me get to St Louis will be having to mis work and other sacrifice to make my jurney to a new and improved life possible. The recovery is not like your usual surgery. Its probably one of the longest there is. (It's explained in the link below.) After surgery when spasticity is gone you get tempory symptoms like muscle spasms, numbess, muscle pain, tingling on bottom of feet, tire easily, mood changes trouble sleeping at night. Alot of the recovery process with the surgery I will be learning that I have muscles in my legs that I never used and using them for the first time because spasticity hides the use of certain muscles. I will be weak for weeks to months (in link below) learning to walk in a new way gaining strength. I will be depending on my wheelchair and walker for awhile after surgery. Than only when needed till my muscles get strong that getting stronger is unpredictable for each person. After SDR I will be needing a lot of help while I am recovering so I will have to get people togather in my community come to help me and my children
for a while after surgery with things like transportation to therapy and Shopping ect. This surgery comes with a lot of commitment before and after to have the best outcome expected I lost 28lbs in 5 months. BMI has to be normal before surgery. I won't be doing things in the house for awhile like vaccuming carring laundry basket, etc. Its like learning how to walk like a baby all over again. I will feel muscles that spasticity hid from me all my life and they will hurt and burn at first till they get stronger and bigger.
I will also fit in or be better excepted in socitity. People can really be mean and discrimating when you look different. When you have disabilities.
Well I hope you enjoyed my story. I couldnt leave anything important out to show everyone I really need this surgery and the help and support for my surgery needs to live a better life.
I appreciate you taking the time getting to know me and my experience in life and with this surgery being the only surgery to change my life and by sharing my story for others to know about SDR to get the experience I will be given soon with your support for this life changing surgery and everything that comes with it happen for my surgery. I will keep everyone updated with progress.
 Please help and support me with just as little as $5 will make me one step to live spasticity and pain free. share this to help me reach my goal.
( you can be an anonymous donor if that makes you feel more comfortable donating). You will still be able to get all of my updates through your email.
https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy
Here is me the way I walk video Press and hold it to watch.
https://youtu.be/i1YnClp2M9o
2 months from being in the NICU the doctor said I was healty. The doctor told my parents that they could take me home soon but they had to be careful not to let me get sick. When I was 3 months old my parents noticed some things about me that were not right with my developement. At 6 months old the pediatrician told my parents to take me to a Neurologist to do more tests because there were some developmental concerns with physical movement and how my sight was that I only saw things moving and light/dark at that age. The tests at the Neurologist showed that I had brain damage and Cerebral Palsy was a possibility that there could be a chance I may not walk. The tests that I had done when I was a baby also showed that I have other condition. Nystagmus - nystagmus is a central nervous system condition that causes the eyes to shake uncontrollably. Often known as dancing eyes. That affects a person's Vision because the world is always moving With their eyes shaking all the time makes it hard to focus and concentrate on things it also is a social problem because you cant make eye contact.
Astigmatism - astigmatism is mis shaping of the cornea causing visual impairment that effects vision.
Optic Nerve Hypoplasia - is where the optic nerves are undeveloped not letting the signal from the eyes get to the brain correctly causing a person not see 20/20 vision.
Clonus - is a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions involving motor pathways, and in many cases is accompanied by spasticity.
The Neurologist said I was legally blind until the age of 3. After a lot of vision therapy my eyes got a little better. At 1 years old I was diagnosed with Spastic Diplegia Cerebral Palsy.
Cerebral Palsy - affects body movement, muscle control, muscle coordination, muscle tone, reflex posture, and balance. I also have alot of falls. The list is endless compared to what the average person does not think about and experience. My feet hurt all the time because spasticity that makes my muscles tighten up causes me to walk on my toes and I get blisters and calluses.
My back hurts everyday because the spasticity makes my hamstrings tight causing my back pain and stiffness and its hard to pick anything up off the floor. My condition makes me very tired because I have to use twice as much energy than the average person to get around. The cold weather makes my legs stiff in the winter. Cerebral Palsy restrict the movement of my legs to do simple things like getting in and out of the bath tub and sitting on the floor. I have developed problems because of the spasticity caused by Cerebral Palsy I have bone spurs in my hips.and I have mild scoliosis.Cerebral Palsy causes premature aging and causes a lot of pain. After this surgery, when the spasticity is gone I will no longer have clonus and my muscles will be relaxed for the first time in my life. (I have learning disabilities through high school) and was in special education. After everything I have been through my whole life I was always a strong person and determined to try everything I wanted to and challenged myself always to do better. I learned how to ride a bike,
swim, and be as independent as I could with intensive physical therapy from when I was a baby until the age I am now. I continue the physical therapy today because that will help me maintain my strength before surgery.
I got accepted to get this life changing surgery on December 17, 2018 In St Louis MO. The surgery is called. (SDR) selective dorsal rhizotomy followed by a second surgery called PERCS 6 to 12 month after SDR.PERCS - is a minimally invasive procedure to lengthen my hamstrings, achilles tendons, and calf muscles from spasticity that caused them to be shorter then they should for my feet to stay flat on the ground when I walk and my knees to be straight when walking and to move normally. when my muscles get the PERCS surgery I will grow 1 - 3 inches. The surgeries are with Doctor TS
Parks in St. Louis MO.SDR surgery is a very complicated surgery and you have to meet the criteria to be a good canidate. Adults have a limited criteria than children. I'm so grateful to be excepted for surgery. There are only a few doctors in the world that do the surgery. Doctor TS. Parks is the best at this surgery. He has patients from all 50 states and 70 countries that come and have SDR.
SDR is about 4 hour long. selective dorsal rhizotomy Is preformed by making an incision in the spine and they remove a vertebra to get to the nerves in the spine and separate the nerve roots into rootlets and test each nerve with EMG to see which ones have spasticity in them. Then the spastic ones are cut and all spastic nerves that is caused by spasticity that is the Palsy in Cerebral Palsy will be removed permanently out of my legs which will cause me to feel what its like to be spasticity free and be able to feel less or no pain. I'll be able to stretch my legs farther than I've ever been able to in life, I will get to feel whats it is like to move my ankles and toes for the 1st time ever and reverse and stop the premature aging process caused the spasticity. spasticity causes the spastc muscles to put pressure on the bones that causes them to get damaged from spasticity and have less to no future orthopedic surgeries because of the permanent removal of spasticit
This surgery comes with endless new Improvement and progress that is guaranteed to make me feel like a new person. Doctor Parks told me it will make me feel younger. It will also make me more confident and have a better quality of life so I can be able to be independent and not to use a wheelchair(by 50 yrs old). I will get to do things I used to do again that I stopped doing like roller skating and riding a bike and try new things. I refuse to let Cerebral Palsy try to take away my independence of my life and selective dorsal rhizotomy is the only surgery to improve Cerebral Palsy and remove spasticity permanently rather than having endless temporary treatments like Botox and Baclofen that in time are actually harmful and time consuming. I will have the comfort that I will not be a burden to anyone when I get older because if spasticity is in my body any longer my body will get worse and I won't get the opportunity for SDR.
The surgery has its expenses: traveling to/from St. Louis, and at home for months,
SDR surgery 7 days 3 days for each follow up at 4 - 24 months,
gas, bus ect.
food for breakfast, lunch, dinner,
hotel for my helpers (NOT FAMILY) to stay,
Exercise equipment:
Viberation plate-$400
balance boardstretch straps
stretch bands
ankle weights
arm weights
new foot wear doctor (recommend)
heating pads
grabber - no bending for 6 weeks
exercise ball-coar and balance
yoga mat for cushion/sturdiness
adaptive adult tricycle (not covered by insurance)
personal trainer is recommended $75 per week at a local gym with gym $45 per month mentorship together with physical therapy and occupational therapy for 2 yrs to build strength.
St. Louis phisical/Occupational therapy $1,500 for two week (each surgery)$3,000 for program Etc.
expenses for people that help for two years.
For each post-op visit the people who help me get to St Louis will be having to mis work and other sacrifice to make my jurney to a new and improved life possible. The recovery is not like your usual surgery. Its probably one of the longest there is. (It's explained in the link below.) After surgery when spasticity is gone you get tempory symptoms like muscle spasms, numbess, muscle pain, tingling on bottom of feet, tire easily, mood changes trouble sleeping at night. Alot of the recovery process with the surgery I will be learning that I have muscles in my legs that I never used and using them for the first time because spasticity hides the use of certain muscles. I will be weak for weeks to months (in link below) learning to walk in a new way gaining strength. I will be depending on my wheelchair and walker for awhile after surgery. Than only when needed till my muscles get strong that getting stronger is unpredictable for each person. After SDR I will be needing a lot of help while I am recovering so I will have to get people togather in my community come to help me and my children
for a while after surgery with things like transportation to therapy and Shopping ect. This surgery comes with a lot of commitment before and after to have the best outcome expected I lost 28lbs in 5 months. BMI has to be normal before surgery. I won't be doing things in the house for awhile like vaccuming carring laundry basket, etc. Its like learning how to walk like a baby all over again. I will feel muscles that spasticity hid from me all my life and they will hurt and burn at first till they get stronger and bigger.I will also fit in or be better excepted in socitity. People can really be mean and discrimating when you look different. When you have disabilities.
Well I hope you enjoyed my story. I couldnt leave anything important out to show everyone I really need this surgery and the help and support for my surgery needs to live a better life.
I appreciate you taking the time getting to know me and my experience in life and with this surgery being the only surgery to change my life and by sharing my story for others to know about SDR to get the experience I will be given soon with your support for this life changing surgery and everything that comes with it happen for my surgery. I will keep everyone updated with progress.
 Please help and support me with just as little as $5 will make me one step to live spasticity and pain free. share this to help me reach my goal.
( you can be an anonymous donor if that makes you feel more comfortable donating). You will still be able to get all of my updates through your email.
https://www.stlouischildrens.org/conditions-treatments/center-for-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy
Here is me the way I walk video Press and hold it to watch.
https://youtu.be/i1YnClp2M9o
Organizer and beneficiary
Jenny Steele
Organizer
Woodstock, IL
Marjorie Rodriguez
Beneficiary