STORIES OF HOPE, COURAGE, DETERMINATION and GENEROSITY…
Over the years, we have seen many special children, all who have amazing stories. Although we cannot share them all, we encourage you to take some time to read and watch the incredible journeys some of these children have taken…They are true “Hope Stories”, filled with courage, love, overcoming challenges, commitment and a whole lot of hope. We thank the dedicated families, donors, surgeons and volunteers who helped these children improve their quality of life!
U.S. HUB PROGRAM – 2016: We would like to introduce Miss Suharshi Dabrera, a lovely 15 year old girl suffering from severe Thoracolumbar Scoliosis who lives with her family in Ragama, Sri Lanka. Suharshi was first diagnosed with her condition over 4 years ago, after she started to feel considerable back pain. Despite the economic conditions of her country and her family’s small income, her parents have remained committed to helping their daughter find treatment. Over the last 4 years, Suharshi has been through a gamut of tests, has received extensive physiotherapy and has been wearing a back brace for 23 hours out of every single day. Unfortunately, the brace is not able to correct her spinal curves and is only worn to reduce pain. She is advised by her physicians that surgery is the only option. The surgery required is not available where she lives and the option to take her overseas would cost her family tens, if not hundreds, of thousands of dollars. Financially it is far beyond their reach. Meanwhile, Suharshi’s condition continues to deteriorate. In 2012, without a brace she had an upper curve (Thoracic Curve) of 66 degrees and lower curve (Lumbar Curve) of 62 degrees. In 2015, Suharshi had new X-rays taken and, despite wearing the brace, her curves have clearly become more severe with a Thoracic Curve of 93 degrees and a Lumbar Curve of 106 degrees. Suharshi’s pain is significant and continues to increase as her self-esteem continues to decline. Thankfully they reached out to SpineHope for help! Suharshi is scheduled for surgery with Dr. Matthew Geck at Dell Children’s Medical Center on March 31, 2016. For more on her story, CLICK HERE. See her video below.
GLOBAL OUTREACH PROGRAM: The below video is about little patient Estefania’s journey with SpineHope. The foundation met this little girl when she was 2 years old, she could not walk- and she was much in need of surgical care. With cervical instability, severe scoliosis and an unknown connective tissue disorder Estefania has undergone multiple surgeries with Dr. Matthew Geck at SpineHope’s original site in Cali, Colombia. Watch this short little video to learn more about how Estefania’s life has been changed forever!
U.S. HUB PROGRAM – 2014: The below video is about our first Hub patient Arleth Lopez who traveled from home country Guatemala to Austin, TX to receive surgical care for her 80 degree scoliosis. She had no access to treatment in Guatemala and her curvature was progressing rapidly. She was the perfect candidate as she both had no other options and her case most certainly demanded medical attention. Her 6 week stay in Texas was an unforgettable and inspiring journey. Watch the short video below to see how Arleth’s experience has changed her life forever!
At the time we met her Maria was a 10 year old little girl, who was full of life. She wanted to interact with everyone she crossed paths with. She was diagnosed with Scoliosis Paralytic and Steiner Syndrome. Unable to live the kind of life she wanted, we were able to get her the operation and care she needed. The procedure was a huge success and she recovered well!
At the time of our first encounter, Efrain was a loving 13 year old orphan who before surgery suffered from progressive scoliosis with dystrophic changes at the main curve. We had the pleasure of giving him the treatment he needed and to this day is as healthy and happy as he could be. He recovered extremely well and we can’t wait to see him again!
Francini is the sweetest little girl who was 10 years old when we first met her. She is a girl who loves watching videos, laughing, and is very affectionate with others. Before surgery she had a rigid thoracic scoliosis of 74 degrees and 62 degrees lumbar moderately and kyphosis of 660 degrees. She also has Cerebral Palsy. We were able to see her on our last trip to Costa Rica and her spine has recovered marvelously and she has little to no pain. She was smiling ear to ear the whole follow up visit!
We enjoyed getting to know this little girl who loved to talk to us and take pictures! She was 12 years old at our initial interaction. She has Dysplastic Scoliosis. Unfortunately we weren’t able to give her surgery on this July 2014 Costa Rica trip. But she is being put in traction so she will be ready to receive care on our next visit! She is a sweetheart and was engaging everyone during clinic!
Dayan was 15 years old who had a curved back from Schewermann disease. She had kyphosis with a 78 degree curve. She received her surgery in February 2014. We saw her for a follow up visit on our most recent trip to Costa Rica. We are very pleased to report that since surgery she has been recovering great! She loves the way she looks now and was radiating a very happy smile when we saw her.
She is a lovely young girl who was diagnosed with Adolecesnt Idiopathic Scoliosis. Her operation was a success. Although she still has some pain, she is very strong and is otherwise recovering very well.
Rochel is one of the sweetest 16 year old girls you will ever meet. She has Congenital Scoliosis and wasn’t able to receive treatment on our most recent visit but will hopefully receive it next time. She is unfortunately bed ridden but that doesn’t stop her from having some of the best style and biggest smiles we have seen. She loves getting to know everyone and we can’t wait to see her next time!
Story of Hope – A boy with the gentlest of spirits and the heart of a warrior!
We would like to introduce Jostin Torrentes Oviedo, a very courageous 11 year old boy from Costa Rica. Our surgeons selected Jostin for the SpineHope U.S. Hub Program due to the severity of his kyphoscoliosis. His spine anatomy was extremely abnormal and he was in need of complex spine surgery. But, there is more to his story that we would like to share…
At the age of only 7 years old, Jostin was admitted to the National Children’s Hospital in Costa Rica with considerable pain in the middle of his back, weakness in limbs, balance issues and coordination problems. His loving parents had no idea what was wrong with their precious son or why he was in so much pain. Fears beyond their imagination came true when the doctors told them he had cancer. Little Jostin was diagnosed with a rare spinal cord and thoracic tumor with acute medullary compression.
Despite financial pressures, his parents were determined to get their son the care he needed. In 2013, Jostin underwent his first surgery where a complete spinal decompression was performed. Soon after his recovery, he began an intense first round of chemotherapy which ended in July 2014. At the end of the chemotherapy, the tumor still was present but had reduced considerably in size. In September 2014, Jostin underwent a second surgery. Once he recovered, he started a second round of chemotherapy and radiation treatment. Thankfully, he does not need any more radical cancer treatment at this time and has been in remission since 2015. Jostin’s body has been battling several conditions at this time. He experiences significant skin issues caused by his radiation treatment, scar tissue along his spinal column, numbness in his extremities, weakness in his arms and severe kyphoscoliosis which caused him a significant amount of pain. The severity of his kyphoscoliosis made it impossible to stand or sit for long periods of time. He struggled to sleep and was self-conscience about the way his body looked. The kyphoscoliosis continued to worsen and was starting to collapse his lung, causing him breathing difficulties and shortness of breath.
Jostin’s journey has been a difficult one, not just for Jostin but for his entire family. Due to the daily care Jostin needs, his Father was forced to quit his job to be a stay at home Dad, with only his Mother able to provide for the family. Due to the costs and hardships involved, it has been a struggle for the family to find a way to get him the care he needs. Thanks to several generous donors, SpineHope was able to provide Jostin and his family the help they needed.
On May 15, 2017, pediatric spine surgeon, Dr. Ryan Murdock, from Central Texas Pediatric Orthopedics and SpineHope’s Assistant Medical Director, performed his delicate and complicated surgery at Dell Children’s Medical Center of Central Texas. His 9 hour operation was smooth and he is recovering well. He walks at least 3 times a day and is experiencing minimal pain.
Those who are responsible for Jostin’s travel and surgery, donating money, time, supplies, equipment and services, include:
- Dr. Ryan Murdock of Central Texas Pediatric Orthopedics
- Dell Childrens of Central Texas & Seton Family Services
- Mercy Medical/American Airlines
- ALG Comprehensive Immigration
- ARA Austin Radiological Association
- Dr. Elena Ruiz & Bee Caves Pediatrics
- Capital Anesthesia Association
- Carlos Pacheco-Murillo, Consul General of Costa Rica
- Austin Children’s Chest Association
- Medtronic Spine
- NuVasive, Inc.
- Pediatric Critical Care Associates
- Pediatric Specialty Services
- Ronald McDonald House
- ‘Specially for Children
- Children’s Hospital Subspecialists of Central Texas
- Seton Children’s Ear Nose & Throat Center
- Seton UT/Southwestern University Physicians Group
- Several Local Austin Costa Rican community volunteers
Jostin is a strong boy who, despite the pain and inability to have a healthy childhood, continues to fight. He wants to have the chance at a normal childhood. He dreams of playing ball with his older brother, being able to ride a bicycle and simply having the ability to breathe normally. He would like to go to the pool and feel confident enough to take his shirt off. In spite of all his surgeries, cancer treatments and pain, Jostin has never been held back in school. He loves school and studies very hard. He remains determined to be a successful student so that he can one day achieve his ultimate dream, to become an astronaut and travel towards the stars.
Jostin would like to tell other kids going through similar health struggles to be strong, stay together as a family and continue to have faith. Through it all, this young man is grateful for the support he has received and, despite the pain, remains a boy with the gentlest of spirits and the heart of a warrior. Thank you for reading his story!