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Community Corner

Young Dixonite Struggles with Rare Disease

Devan Cox Looks Toward New Treatment

When the doctor called, Virginia Clark left the bedroom where her 21-year-old son, Devan Cox, lay huddled in blankets on a bed donated by the Dixon Rotary Club.

“I would tell them not to be lazy,” he answered my question about what he would want to tell others.  I was puzzled as I knew Devan since when he was 6-years-old when our church prayed for him to win his battle with cancer and I knew he was not lazy. This Dixon High graduate was working two jobs and attending Solano Community College when he began to get sick again. I asked him what he meant.

“I will do everything myself,” he struggled to speak. “ I’m going to be happy to get myself a drink and will help clean up. There are so many things I wish I could do,” he said. His mother returned to the room and helped him drink some water. Devan’s diagnosis of a very rare condition called CIDP, or Chronic inflammatory demyelinating polyneuropathy was finally discovered just a few months ago.

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The hallmark of the disease is loss of the myelin sheath—the fatty covering that insulates and protects nerve fibers of the peripheral nerves. Many might remember the movie, “Lorenzo’s Oil,” a true story that was about a child with the same condition.

“Because his antibodies are attacking the myelin sheath, which sends signals to the brain, the signals are mixed up,” Virginia explained. He is numb from his knees down to his feet and his body temperature bounces all over the place. He has lost weight and he has full body muscle atrophy.

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“He came home from work on July 21 saying that his arm hurt and that his feet were burning,” Virginia said of the beginning of the very long struggle into the world of doctors and hospitals all over again.

“Our healthcare is a joke,” she said in complete angst. “I understand that everyone at a hospital has to get paid by I wasn’t pleased at watching my son completely deteriorate before being taken seriously. He went from walking with a cane, to a walker, then to a wheelchair in a matter of a month and a half,” she said.

"Doctors at the hospital don't talk to you," said Devan. He has learned more from his chiropractor who has taken the time to explain how his body works than the neurology doctor although the physician who has been Devan's doctor since birth has been very good about necessary referrals and even came to see Devan in the hospital on his day off, said Virginia.

The single mother of two has worked for Gymboree in Dixon for the past eight years and had an excellent health plan but while Devan was sick and going back and forth for medical tests, Virginia first went through her vacation time then flexible time off from work. When that ran out, she went on disability for physical exhaustion and stress.

“We have no help and he cannot even hold a little plastic cup or go to the bathroom,” she said looking tired. “When he is sleeping, I’m doing paperwork—tons of paperwork and phone calls. I try cleaning up at night.”

Because Devan has to be moved throughout the night to prevent bedsores, Virginia has not had more than four hours straight sleep in months.

“My whole time is consumed with taking care of Devan,” she said. “It takes 20 to 30 minutes just to get in the car but you got to keep going and you have to stay positive as possible because the body won’t heal in a depression.”

Devan has undergone three plasma procedures that involve taking antibodies out and replacing them with albumin and he did start to get better but then he regressed. The doctors now are giving him medicine and plan this month for him to have an infusion that is supposed to take the antibodies that are attacking the myelin out of his system and replace them with different ones.

In the meantime, they were “adopted” by two different families through Dixon Family Services and were given thoughtful and much-appreciated gifts, she said. And, the Dixon Rotary Club donated a new bed. In addition, a good Samaritan donated several visits of chiropractic care to Devan and that has been helpful.

Friends and family try to help but there just isn’t enough and she says she feels like she’s “in a room that never stops spinning.” Christmas was just like any other day for them, she said although people have called and asked how they can help but it is difficult for her to express the needs.

“I understanding everyone has his or her own problems and issues,” she said. ”As a mom, I would know automatically how I could help. I don’t’ want to have to ask someone to help me clean the house or help with a dinner.” Desiree, her 14-year-old daughter, has been a big help. “I tell her that if you see anybody struggling, help him.”

Devan, who is in constant pain, says he spends his time thinking about what he’ll do when he gets well. He was planning to study music productions and audio.

“His dreams and life were all planned out and he was so determined,” said his mother as she covered up Devan’s shivering legs.

“I will never again take my health for granted,” he whispered.

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