Dalton Tefteller's Clinical Trial
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Dalton’s Story
Dalton Tefteller was born on July 1,1999. Dalton appeared to be the perfect, healthy baby boy that all parents dream of, but at 15 months old, that changed for us. Dalton had gotten encephalopathy (swelling of the brain), became lethargic, quit walking and talking. No one could tell us where our perfect, healthy and happy baby went to. We ended up with a diagnosis of encephalitis of unknown etiology. We were told that he would have to relearn how to walk and talk again but, that he should never get sick like this again. Dalton worked so hard, having multiple therapies and over time, he did walk and talk again, but he never returned back to baseline. One year later, he became ill again, and again, he stopped walking and talking, we were devastated! We took him to Mayo Clinic and they ran test after test, but no one had any answers. Spinal taps, brain MRI’s, muscle biopsies, but still there were no answers to be found! We knew deep in our hearts, someone had to have the answers and somewhere, there was another child out there like Dalton.
Dalton’s illness went on like this for 15 years, seeing specialist after specialist and doctor’s just shaking their heads. As he grew, he had a harder time walking. He got braces and muscle clippings and botox injections to try to keep him walking, but those were just temporary fixes.
In June, 2014, Dalton became so ill, that we thought we were going to lose our beautiful boy and our doctor at Cardinal Glennon referred us to Children’s Hospital in St. Louis to have total exome gene testing done. On July 1, 2015, we were told that Dalton had a rare genetic disorder called Aicardi Goutieres. We could not believe it, after everything he had been through and all the years of thinking he was born normal, we finally found out it was a very rare genetic disorder. It was not only a rare disease, but that he was atypical and most children diagnosed with it never make it to their teen years.
Dalton had bilateral hip surgery on January 10,2017 because both of his hips were dislocated due to the spasticity he has in his muscles. He now has plates and screws in both hips and at this time is unable to bear weight or stand up. He is in a lot of pain and he pops and creaks every time he is moved. He is eligible to do a clinical trial at the Children’s Hospital in Philadelphia. We are hoping the medication that he will start taking will help with his pain and joints.
It is somewhat a relief for us to finally know what Dalton’s disease is, but at the same time, when he gets sick, there is nothing anyone can do and it is heart wrenching to watch our boy become like an empty shell, not knowing what caused it, how long it will last or what will bring him back to us. We are sharing this with you, not for you to feel sorry for Dalton but because we want you to know Dalton’s story, he is an amazing boy with an amazing smile that never quits! Every morning, unless he is sick, he wakes up with a smile on his face. He makes our world a better place and we were definitely meant to have him, without him, our family would not be who we are today! We are the lucky ones, we get to love our beautiful, sweet boy every day and watch the joy that he spreads to other people!
In closing, please know that your donation is greatly appreciated and will give one young man and his family, a whole lot of hope and inspiration!
Dalton Tefteller was born on July 1,1999. Dalton appeared to be the perfect, healthy baby boy that all parents dream of, but at 15 months old, that changed for us. Dalton had gotten encephalopathy (swelling of the brain), became lethargic, quit walking and talking. No one could tell us where our perfect, healthy and happy baby went to. We ended up with a diagnosis of encephalitis of unknown etiology. We were told that he would have to relearn how to walk and talk again but, that he should never get sick like this again. Dalton worked so hard, having multiple therapies and over time, he did walk and talk again, but he never returned back to baseline. One year later, he became ill again, and again, he stopped walking and talking, we were devastated! We took him to Mayo Clinic and they ran test after test, but no one had any answers. Spinal taps, brain MRI’s, muscle biopsies, but still there were no answers to be found! We knew deep in our hearts, someone had to have the answers and somewhere, there was another child out there like Dalton.
Dalton’s illness went on like this for 15 years, seeing specialist after specialist and doctor’s just shaking their heads. As he grew, he had a harder time walking. He got braces and muscle clippings and botox injections to try to keep him walking, but those were just temporary fixes.
In June, 2014, Dalton became so ill, that we thought we were going to lose our beautiful boy and our doctor at Cardinal Glennon referred us to Children’s Hospital in St. Louis to have total exome gene testing done. On July 1, 2015, we were told that Dalton had a rare genetic disorder called Aicardi Goutieres. We could not believe it, after everything he had been through and all the years of thinking he was born normal, we finally found out it was a very rare genetic disorder. It was not only a rare disease, but that he was atypical and most children diagnosed with it never make it to their teen years.
Dalton had bilateral hip surgery on January 10,2017 because both of his hips were dislocated due to the spasticity he has in his muscles. He now has plates and screws in both hips and at this time is unable to bear weight or stand up. He is in a lot of pain and he pops and creaks every time he is moved. He is eligible to do a clinical trial at the Children’s Hospital in Philadelphia. We are hoping the medication that he will start taking will help with his pain and joints.
It is somewhat a relief for us to finally know what Dalton’s disease is, but at the same time, when he gets sick, there is nothing anyone can do and it is heart wrenching to watch our boy become like an empty shell, not knowing what caused it, how long it will last or what will bring him back to us. We are sharing this with you, not for you to feel sorry for Dalton but because we want you to know Dalton’s story, he is an amazing boy with an amazing smile that never quits! Every morning, unless he is sick, he wakes up with a smile on his face. He makes our world a better place and we were definitely meant to have him, without him, our family would not be who we are today! We are the lucky ones, we get to love our beautiful, sweet boy every day and watch the joy that he spreads to other people!
In closing, please know that your donation is greatly appreciated and will give one young man and his family, a whole lot of hope and inspiration!
Organizer
Angie Tefteller
Organizer
Hillsboro, IL
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