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Young boy copes with 'old' condition

When people hear the word arthritis, most think of slow moving seniors with aching joints. And then there's Evan Warren, who's endured arthritis for more than half his life. He's five years old.
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Natalie Warren and son Evan, 5, spend hours in the hospital every three weeks to take IV therapy to help manage his systemic juvenile idiopathic arthritis.

When people hear the word arthritis, most think of slow moving seniors with aching joints.

And then there's Evan Warren, who's endured arthritis for more than half his life.

He's five years old.

Evan was diagnosed before his second birthday with systemic juvenile idiopathic arthritis, one of the most rare forms of juvenile arthritis, which not only affects joints but internal organs as well.

It started with a swollen ankle just after he turned one. Evan had a limp and the doctor thought he might have just twisted his ankle. Then Evan developed a persistent rash that moved all over his body and was accompanied with a fever, sometimes reaching 104 degrees.

"It was really quite challenging, he would get the rash, the fever - they did some blood tests and found out he was anemic, he would scream in pain when we changed his diapers, this continued for quite a long time," said Natalie Warren, Evan's mom.

After many trips to the doctor, a recommendation from a friend who was a physician, and a reference to a rheumatologist at Children's Hospital in Vancouver, the diagnosis came down not 10 minutes after Evan was seen.

"The doctor said 'your child is very sick, we're admitting him to the hospital' and we were there just shy of two weeks, " said Natalie. "There is no known cause, that's why idiopathic is in the title, it means they don't know why he got it, he just has systemic juvenile idiopathic arthritis."

When Evan was admitted to hospital, tests showed he had an enlarged liver and enlarged spleen. If unchecked the disease can affect the heart, which is a fatal condition.

When Evan was released from hospital Natalie had to inject him daily with his biologic medication, which copies the effects of substances naturally made by the body's immune system. Evan was also put on the steroid prednisone. In the spring of 2013 doctors changed Evan's medication from daily injections to the IV therapy with medication specifically for Evan's type of arthritis.

A typical day at the hospital sees Evan and Natalie arrive at 8:30 a.m., freezing cream is put on the injection sight to minimize the pain of having the intravenous put in Evan's arm. Then it's a lot of waiting for the freezing to take affect, the IV to be put in his arm, the IV to start and slowly the medicine works its way into his system. They leave the hospital at about 1 p.m. The biologic medication administered to Evan is called tocilizumab and is administered by a nurse trained in chemotherapy treatment because of the compounds that are involved, said Natalie.

"This biologic medication targets a specific part of the immune system and puts it on a pause," said Natalie. "His immune system is compromised so we have to be very careful about what's going on around him."

The tocilizumab has been a very successful treatment for Evan.

"It's been life changing," said Natalie. "If you hadn't seen him in this hospital bed, you wouldn't know he was sick at all. He runs, jumps and plays just like every other little boy."

Because Evan has spent a lot of time in the hospital the family has taken part in the Child Life Program. Sandra Wyatt, child life specialist, supports families while in hospital, offering many distractions while children are in treatment. Wyatt has her cohort chihuahua therapy dog Jazz who accompanies her and she always comes with her bag of tricks, said Natalie.

"I really believe Sandra is out of Hot Wheels cars because every time Evan is offered another Hot Wheel he takes one," said Natalie.

To give back to the program, Evan's older sister Audrey decided she wanted to help and told her mom she wanted to set up a lemonade stand to raise money for the Child Life Program.

"Audrey has seen what a tough time Evan has when he comes to the hospital and how wonderful it is when Sandra comes to distract him," said Natalie. "Audrey has a big heart and she just wants to help."

To that end Natalie, dad Ross, Evan and eight-year-old Audrey will be setting up a lemonade stand from 10 a.m. to 1 p.m. in front of Home Sweet Home, the local grocery store at 1185 Third Ave. this Saturday. All proceeds will go to the Child Life Program to help keep those Hot Wheels and other goodies in good supply.