Dana Smith-Russell is an expert at linking people to the services they need when they live with disabilities. As a medical case manager for people catastrophically injured during work, Russell is an advocate, contractor and, according to those she cares for, guardian angel.
Russell follows the doctor’s visits. It coordinates with insurance companies to make sure vital care is covered. Locate and adapt vehicles so that people can move around and modify homes to adapt to new needs and capabilities.
However, when his own son contracted a rare, life-threatening condition, Russell — with his education, experience, and connections — felt powerless to help him find the treatment he needed.
“I have two master’s degrees. I am used to dealing directly with insurance companies. I had doctors supporting me. And yet I struggled to find resources to save my son’s life, ”he said. “I’m not talking about having difficulty finding basic services. I’m talking about saving my son’s life. “
In 2018, Connell Russell, who is autistic and nonverbal, contracted a case of streptococcus. When the infection cleared, he suddenly developed a new symptom. The 13-year-old simply stopped eating. No amount of persuasion worked. Every bite became a battle.
Connell was diagnosed with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS), a condition that can cause any number of complications, such as extreme irritability, obsessive-compulsive behavior, hallucinations, tics, panic attacks, and even all catatonic, traffic. as states. In Connell’s case, PANDAS completely shut down his ability to eat.
Dana and Kim Russell began a long and sometimes terrifying hunt for treatments.
“Our son had a diagnosis that was very new in the medical field,” Russell said, “so sometimes I felt like I was struggling with the whole medical system because I couldn’t find doctors to treat him.”
It was not the first time they had fought on his behalf. When Connell first entered school in the rural district of Georgia, his school was not fully equipped to meet his special needs. Connell’s doctors provided detailed reports on his condition and needs. Russell studied the laws governing special education. And finally, the school system faced the challenge.
“There are now a lot of services available for special needs students in our district, including a huge new sensory room,” says Russell, “but we had to work very closely with the school system to get it. The district had money but I needed time and courage to create resources for students like Connell. ”
It was just as difficult to find health services in his small town. When Connell was young, there were no pediatric physiotherapy, speech therapy, or occupational therapy services outside of school. The family traveled to Atlanta, the nearest major city, to get the services they needed.
And because autism was then considered a pre-existing condition, they paid out of pocket for most of these services.
“It was my job to work with insurance companies and I couldn’t get insurance for my son because of his autism diagnosis. Nine different insurance companies rejected us, “Russell recalls.” I was willing to pay whatever was needed, but before protections for pre-existing conditions. ”
Then, when Connell underwent $ 8,000 dental surgery, a professional at the surgical center asked if they had considered applying for disability benefits through the Social Security Administration (SSA). Russell knew of the benefits, but assumed he would not be eligible for the income-based program.
He contacted a member of the Georgia Governor’s Disability Council, who advised him to travel to the SSA office, in person and with the entire family in tow, to request it. After 29 days, Connell received benefits.
As the weeks run out in months and treatment after treatment fails, Connell visibly shrinks. At one point, he was hospitalized for nine days after removing the feeding tubes. There were mornings when her room was so quiet that her parents were afraid of what they would find when they opened the door.
Trying to silence his emotions, Russell decided to see Connell as one of his clients would. Finding help became his second full-time job. He became involved in a national PANDAS organization. He worked with the National Institutes of Mental Health (NIMH) in Washington, DC.
Finally, expanding the network yielded results.
Because Connell’s situation was so extreme, he caught the attention of medical research experts. Many children with PANDAS reject certain foods or experience a short-term denial, but Connell’s denial was complete. The researchers advised him to stop the protocols from working and to try a treatment called intravenous immunoglobulin (IVIG), which had helped reduce symptoms in some children with PANDAS in a 2016 controlled trial.
That was when an important door opened. Dr. Daniel Rossignol, Connell’s autism specialist, agreed to administer IVIG treatment at a facility in Melbourne, Florida. But a major hurdle remained: cost.
The IVIG to treat PANDAS was not approved by U.S. insurance companies (nor by Canada’s publicly funded health care system: Kim Russell is Canadian). Medication alone, not counting travel or equipment, averages $ 7,000 to $ 10,000.
The family was preparing to mortgage their home when a close friend contacted them through social media, offering to set up a GoFundMe to cover Connell’s medical expenses. With the funds from this campaign, the family traveled to Florida and began Connell’s treatment.
After 360 days of total denial of food, he weighed 62 pounds.
Connell’s recovery was uncertain and the treatment process was difficult. Back home, feeding and giving medications were still a struggle five times a day. Although doctors had initially expressed skepticism about the family’s ability to carry out daily care, Kim did so with the help of her neighbors and Connell’s twin brother.
Six months after the IVIG, Connell went downstairs one morning, opened the fridge, and unfolded a leftover burrito. He began to choose it. Small bites. His family watched in stunned silence. By the end of the day, everything had been eaten.
There have been setbacks since that morning: a viral infection caused a relapse and another round of IVIG, and the COVID pandemic meant a year of anxious isolation, but Connell is repairing it.
In the end, Connell’s life was not saved by a single superhero, but by a miraculous mosaic. Government assistance, brilliant doctors and researchers, advocates of state and national organizations, generous friends and neighbors, and behind it all, the fierce persistence of their mothers.
“For 18 months, all of our energy was to keep Connell alive and get him the resources he needed,” Russell said. “It simply came to our notice then. But we had the support of friends I hadn’t seen for years, and reconnecting with those people gave me strength ”.