Two or three days after we got home from Austria, he could hardly walk. He was seeing double. You could see the muscles in his arms. They were… rippling under the skin is the only way I can describe it. It was really weird. We took him to the hospital, and we told them, “My son can’t walk. He can barely stand up. He’s 15 years old, and he lost 20 pounds in two weeks. He’s a state champion swimmer who is used to swimming five miles a day, and now he can’t even walk. What’s going on?”
Motorcycle road racers face challenges every single day. Not only on the track during practice, qualifying, and the races, but also off the track and year-around as they train their bodies and minds to compete in what is arguably the most exciting form of motorsport on the planet.
And, for many of the Liqui Moly Junior Cup and Supersport riders competing in the MotoAmerica series, the challenges of adolescence also come into play. These riders’ bodies and minds are still growing as they progress towards adulthood.
For Altus Motorsports rider Jaret Nassaney, on top of being a developing road racer and an adolescent, he was also challenged by something that affects only about eight out of 1 million people each year.
It’s called Acute Disseminated Encephalomyelitis or ADEM. ADEM is a rare autoimmune disease marked by a sudden, widespread attack of inflammation in the brain and spinal cord. ADEM also attacks the central nervous system and damages their myelin insulation, which, as a result, destroys the white matter. It is often triggered after the patient has received a viral infection.
ADEM’s symptoms resemble Multiple Sclerosis (MS). However, unlike MS, ADEM usually occurs in children, although adolescents and adults can get the disease, too. ADEM is marked by a rapid fever, loss of consciousness, coma, and death.
As Janette Nassaney, Jaret’s mother and Altus Motorsports team owner, describes it, “ADEM is a one-in-a-million disease where your whole nervous system demyelinizes. It’s like the coating on your nervous system just comes off.
Recently, we sat down with Janette, and asked her to share Jaret’s story. Here’s what she said:
We had gone over to Austria for the KTM dealer show day, and when were over there, Jaret thought he had gotten a sinus infection. He started to feel sick on the flight home. So we called the doctor before we landed and got him an appointment.
At first, the doctor also thought he had a sinus infection, and he prescribed antibiotics. But, Jaret just kept getting worse, and he also had a severe headache. So they put him in an ambulance and we went to The Children’s Hospital at Oklahoma University Medical Center. The neurologist did a five-hour MRI on him, from head to toe. The MRI revealed that he had lesions on his brain, and on his spinal cord. They did a couple of spinal tests on him, too. They were going back and forth as to whether it was ADEM or Multiple Sclerosis, but MS doesn’t usually attack you that quickly. So, they finally decided it was ADEM. And by this time, the kid couldn’t walk. He could hardly see. He couldn’t even go the bathroom on his own.
By the following weekend, he was getting better, and they thought he was on the downhill side of it. And because he’s always been so healthy, they thought his body kind of fought it off, so they sent him home. They said it was going to take a while, but he was going to recover. On Sunday morning, he told us that he just didn’t feel good. Within three hours, he went so far downhill that he couldn’t swallow, and he couldn’t even stand. We had to carry him into the hospital because he couldn’t walk. He couldn’t stand. He couldn’t see. It was so bad by the time we got there.
They pulled me aside and said, “He’s gone downhill so fast that I can’t tell you whether he’s going to make it through the night.” I’m like, “Okay, what do I do?” They’re like, “Hold his hand.” I said, “What are you going to do?” So they gave him really, really high doses of steroids intravenously to reduce all the swelling in his brain and in his spinal cord.
Within 24 hours or so, he could see again. Then, by the end of the week, he was doing much better. Everything started healing and he was able to come home. He had to go back every two to three months for MRI’s to make sure that all the lesions were going away. He still has a scar on his brain, and his hands tremble a little bit. He wrecked at Sonoma last year, and Dr. Rossi did a concussion test. They noticed that his eyes waver a little bit on the up-and-down test. Dr. Rossi was like, “What’s going on?” So I had to explain it to Dr. Rossi. Jaret’s never had a concussion, but you could see on the brain wave test when it hits the area of his brain where the scar is.
The fact that Jaret didn’t get worse than he did is a blessing. Do you know who Victoria Arlen is? She works for ESPN, and she was on “Dancing with the Stars” not too long ago. She had ADEM, and she spent nearly four years in a vegetative state, “locked” inside her own body, completely aware of what was going on, but unable to move or communicate. Then, when she came out of it, she still couldn’t use her legs. She had a world-record-breaking performance at the Paralympics US swimming trials, qualified for the Paralympics, and won four medals. After almost 10 years of being paralyzed from the waist down, she learned to walk again, even though she still has no sensation in her legs. So the fact that Jaret came through his whole ordeal with only a scar on his brain is miraculous. At Oklahoma University Children’s Hospital, Jaret is the first patient they’ve ever had with ADEM.