SDR Surgery for Payton Light
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After a very difficult pregnancy, Jillian Constance and Payton Elizabeth were born at 29 weeks 6 days weighing just 2 lbs 15 oz. Despite their tiny size, we were very blessed that the girls were healthy, with no major complications during their stay in the NICU. After 5.5 weeks in the hospital, Bob and I were finally able to bring our beautiful baby girls home together.
As the girls grew older, it became apparent that Payton was not developing at the same rate as Jillian. We decided to take Payton to a childhood developmental specialist at the age of 6 months and were told that her delays were most likely the result of her premature birth. As Jillian and Payton continued to grow, Payton's delays became even more visible. At 1-year old, Payton could not even sit on her own, let alone crawl or walk.
When Payton was 18-months old, we decided to go back to the specialist for an update on her condition. Unfortunately, what the doctor had to say was not positive. She told us that Payton most likely had mild to moderate Cerebral Palsy and may never walk independently. Needless to say, we were devastated. I just sat there and stared at my beautiful daughter and could not imagine her not having the best life possible. I could not imagine her not being able to play tag with her sister, ride a bike, swim in the ocean or run around and play with her friends. We were heartbroken. Right then and there we decided that she would have a great life, and Bob and I would make sure of it.
From that moment on, we have done everything possible to make our girls' life as happy and "normal" as possible. Payton is a happy, healthy, well adjusted 5-year old who loves dressing up in dresses, wearing make up and playing with her American Girl doll Gretchen. She loves to play tag with Jillian (although this is done on their knees), attends pre-K with all her friends and is great at planning parties. She is everything we had hoped for and has touched the life of every person she has met.
We continue to search for ways to help Payton become more independent. Dr. Park of St. Louis Children's Hospital is one of the leading neurosurgeons in the world specializing in cerebral palsy and spasticity. Spasticity is extreme tightness in the muscles that inhibits the muscles from moving properly, leading to gross motor delays. There is zero benefit to spasticity and Dr. Park and his team have found a way to remove it. Through a procedure called Selective Dorsal Rhizotomy ("SDR"), the nerves that cause spasticity can be cut allowing the child/adult the ability to move more freely.
Becuase of her spasticity, Payton is unable to walk or stand unassisted, however is able to walk very short distances in a reverse walker. She has difficulty sitting and also has delays in her fine motor skills such as writing, coloring and cutting.
Payton was accepted by Dr. Park and his team for this amazing surgery. Dr. Park told us that if Payton had this surgery, she would be able to sit unassisted, use her hands and arms more freely, walk more effeciently in her walker, and with hard work and determination, walk with canes in a year or two! The surgery will take place in St. Louis on May 29th. Payton will be in the hospital 6 days, and our family will need to stay down there at least 10 days (maybe more if additional therapy can be approved). In order for Payton to have the best results possible, she will need intensive physical therapy 5 days a week for 6 months and 3-4 times a week for up to two years. Besides the travel, lodging and medical costs associated with the surgery, therapy will be the largest out of pocket cost for our family. Payton is only allotted 30 physical therapy sessions a year through insurance. Everything beyond that would need to be paid out of pocket.
All money raised through this site will be used for any medical, therapy and equipment expenses associated with this surgery. Funds not used will be donated directly to United Cerebral Palsy of Greater Cleveland.
Thank you all so much for your support. Our family is eternally grateful!
As the girls grew older, it became apparent that Payton was not developing at the same rate as Jillian. We decided to take Payton to a childhood developmental specialist at the age of 6 months and were told that her delays were most likely the result of her premature birth. As Jillian and Payton continued to grow, Payton's delays became even more visible. At 1-year old, Payton could not even sit on her own, let alone crawl or walk.
When Payton was 18-months old, we decided to go back to the specialist for an update on her condition. Unfortunately, what the doctor had to say was not positive. She told us that Payton most likely had mild to moderate Cerebral Palsy and may never walk independently. Needless to say, we were devastated. I just sat there and stared at my beautiful daughter and could not imagine her not having the best life possible. I could not imagine her not being able to play tag with her sister, ride a bike, swim in the ocean or run around and play with her friends. We were heartbroken. Right then and there we decided that she would have a great life, and Bob and I would make sure of it.
From that moment on, we have done everything possible to make our girls' life as happy and "normal" as possible. Payton is a happy, healthy, well adjusted 5-year old who loves dressing up in dresses, wearing make up and playing with her American Girl doll Gretchen. She loves to play tag with Jillian (although this is done on their knees), attends pre-K with all her friends and is great at planning parties. She is everything we had hoped for and has touched the life of every person she has met.
We continue to search for ways to help Payton become more independent. Dr. Park of St. Louis Children's Hospital is one of the leading neurosurgeons in the world specializing in cerebral palsy and spasticity. Spasticity is extreme tightness in the muscles that inhibits the muscles from moving properly, leading to gross motor delays. There is zero benefit to spasticity and Dr. Park and his team have found a way to remove it. Through a procedure called Selective Dorsal Rhizotomy ("SDR"), the nerves that cause spasticity can be cut allowing the child/adult the ability to move more freely.
Becuase of her spasticity, Payton is unable to walk or stand unassisted, however is able to walk very short distances in a reverse walker. She has difficulty sitting and also has delays in her fine motor skills such as writing, coloring and cutting.
Payton was accepted by Dr. Park and his team for this amazing surgery. Dr. Park told us that if Payton had this surgery, she would be able to sit unassisted, use her hands and arms more freely, walk more effeciently in her walker, and with hard work and determination, walk with canes in a year or two! The surgery will take place in St. Louis on May 29th. Payton will be in the hospital 6 days, and our family will need to stay down there at least 10 days (maybe more if additional therapy can be approved). In order for Payton to have the best results possible, she will need intensive physical therapy 5 days a week for 6 months and 3-4 times a week for up to two years. Besides the travel, lodging and medical costs associated with the surgery, therapy will be the largest out of pocket cost for our family. Payton is only allotted 30 physical therapy sessions a year through insurance. Everything beyond that would need to be paid out of pocket.
All money raised through this site will be used for any medical, therapy and equipment expenses associated with this surgery. Funds not used will be donated directly to United Cerebral Palsy of Greater Cleveland.
Thank you all so much for your support. Our family is eternally grateful!
Organizer
Carrie Light
Organizer
Cleveland, OH
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