Wright-Patterson Air Force Base, Ohio —
Wright-Patterson Air Force Base, Ohio – For the Anderson family, protecting their 8-year-old son Reeve proved to be the battle of his life.
Born with Down Syndrome, Reeve lived a normal life until strange symptoms appeared. His parents, Shana and Jason, were completely stunned and knew they weren’t normal.
“Shortly after he turned four, he developed a very high fever that lasted for several days and started having random nosebleeds all the time,” Shanna said. I couldn’t walk, I didn’t know what was going on.”
When Reeve got stuck, his parents took him to the emergency room at Dayton Children’s Hospital. At the time, doctors couldn’t find anything wrong, summarizing Reeve’s inability to walk or endure the inflammation.
Reeve started walking again after visiting the hospital, but other medical problems soon appeared, including reduced muscle usage, lack of energy, and dental health.
Shana and Jason took Reeve to Dayton Children’s Hospital multiple times over the course of several weeks, but the doctors had no choice but to advise Reeve to be taken to a pediatrician.
Knowing that Reeve was going through this process of regression and that there was no easy fix caused stress and anxiety, Andersons recalled, and could only hope an answer would come soon.
“I was in complete denial,” said Jason, now a colonel and faculty member at the Air Force Institute of Technology. “I wanted to fix what was happening to Reeve, but I knew I had to harness my energies to protect and care for him.
“Despite all my troubles, I never stopped looking for the help my son needed.”
find hope in familiar places
The Andersons visited doctors in multiple areas seeking an explanation and diagnosis for Reeve, but came to a dead end. Doctors said Reeve’s symptoms were due to Down syndrome and that he was just struggling to accept his limitations.
Time and time again I was either given information that partially diagnosed Reeve’s symptoms with nothing to do with my other symptoms, or was told nothing could be done and no next steps.
“After multiple visits, I was referred to see a doctor at Wright-Patterson Air Force Base. Thankfully, we already knew who she was,” Shana said. .
Dr. (Lt. Col.) Cassandra Burns, a pediatric neurologist with the 88th Medical Group, first saw Reeve as a baby. At the time, Barnes was examining him for his rapid development as a child with Down syndrome.
“She didn’t know what it was at first, but what I appreciated about that first appointment was that she spent about two hours with Reeve,” Shana said. “She listened to me and Jason, took lots of notes, asked questions, and started putting together a list of possible things.
“In the past, we weren’t sent off with ‘I don’t know’ and ‘Good luck’.”
Shana said Burns took the initiative to learn more about other possible solutions and showed that she really cared.
She scheduled multiple tests, including a spinal tap, in coordination with Children’s Hospital Dayton, Cincinnati Children’s Hospital Medical Center, and Nationwide Children’s Hospital in Columbus to diagnose the cause of Reeve’s declining health.
After working with other doctors to interpret the test results, Barnes discovered that Reeve’s symptoms were due to a rare condition called cerebral folate deficiency.
This discovery led Barnes to determine that none of the local hospitals could treat Reeve’s condition. Dr. Richard Fry, Director of Research and Neurologist at Rossignol Medical Center, treated him.
“Cerebral folate deficiency is associated with inadequate transport of folate from the blood to the nervous system,” says Frye. neurodevelopmental disorders, psychiatric disorders such as depression and schizophrenia, and metabolic disorders such as mitochondrial diseases and dysfunction. I’m starting to understand that it can have an impact.”
‘Great’ recovery, ongoing battle
Once Reeve and his family arrived in Phoenix, doctors there also diagnosed mitochondrial dysfunction, which occurs when structures fail to generate enough energy for cells to function. There is no cure, but symptoms can be managed with physical therapy and medication.
Fry understood that the best way to help Reeve and find a lasting solution was to take the time to analyze him.
“Reeve was enrolled in our clinical and mitochondrial natural history studies,” he said. And patients can be followed over time to determine which treatments might help children with certain underlying conditions, such as brain folic acid or mitochondrial disorders.
“This approach of following patients over time in a standardized manner has led to the development of therapies in my research program such as leucovorin to treat brain folic acid deficiency, and has received federal funding for this compound. It led to clinical trials.”
Frye asserted that solutions will soon be found as data, samples and time from ongoing clinical care dedicated to Reeve become available.
“Our son was non-verbal, could barely walk, could not feed on his own and was suffering from extreme fatigue, but now he speaks, eats and runs. “He’s improved so much over the past year and is accomplishing things we never thought possible. His recovery will benefit all of us in the family.” It made a great impact.”
Reeve’s condition has improved, but Andersons is still battling his condition with dozens of medications every day. Jason says the medicine is absolutely necessary for Reeve, but it’s only a temporary solution.
“I hope we can come up with a long-term solution that works, in which case I believe we’ll be able to get a bigger portion of the old reeve back,” he added.
Reeve has made great strides toward recovery. His parents say he may not be the same kid he was before, but Shana and Jason are happy to see Reeve embrace his childhood again.
They both believe Reeve would have been in worse shape if it hadn’t been for the Air Force and Barnes.
“Being able to see Reeve robbed of a significant part of his life and start taking it back meant everything to me,” Barnes said. It was unprofessional, but I needed to put Reeve’s health in the hands of a more competent doctor than I was.”
She continues to monitor Reeve’s progress and makes sure the Andersons have the support and advice they need.
“When you’re in the military and you have access to medical doctors and base hospitals and other Air Force resources, it’s a missing step that many families don’t have and can’t appreciate,” Shana said. I don’t know where Reeve would have been without her and this path she gave us that has led us to these treatments he is receiving. I hope she knows it’s just a blessing.”
Jason added: Dr. Burns is great. She is very smart, methodical and caring. She has all the characteristics we expect from a healthcare provider. ”
