Exercise is a priority in keeping the disease at bay, and this four-year-old does it often and joyfully.
By Jonathan Friedman / Special to The Malibu Times
Aspen DeMeritt is an active and vibrant girl with a cute face that could make even the most miserable person smile. At just four years old, she swims almost everyday, dabbles in diving and plays soccer and T-ball. She has even tried karate. At home, Aspen can be seen in constant movement, either running or testing her acrobatic skills on a giant bean bag. She also enjoys using crayons to draw portraits and spell her name. One would never know the young Malibu resident suffers from arthritis.
The warning signs came when Aspen was just 15-months-old, and her parents Kevin and Amanda noticed she would limp after getting up from naps. They took her to a doctor, and the response was their daughter’s leg was falling asleep. But the limping continued.
“We knew sometime was more wrong than a sleepy leg every day,” Kevin said. “So when we finally took her to another doctor, she said, ‘Let’s check her for arthritis,’ which sounded weird at 18 months.”
They then took Aspen to a specialist, who confirmed their daughter had juvenile polyarticular rheumatoid arthritis. This is a disease that affects children, in which the immune system mistakes healthy cells and tissue as foreign substances, creating inflammation. It is a serious disorder that ranges in severity and can even lead to uveitis, an inflammation in the eye that can cause various problems, including blindness. Doctors do not know why children get this arthritis. There is no cure, but drugs can reduce the problems, and for many children it eventually goes away before adulthood.
“As a mother, when you hear your child has a devastating disease, you feel a range of emotions from guilt from not finding it early enough, wishing you would have taken the chance and found different doctors earlier,” Amanda said in an interview with the Arthritis Foundation for a video promoting the Arthritis Walk on June 5 in Santa Monica at which Aspen is one of the honorees.
Aspen was immediately put on three drugs, two shots and an oral one. Her knee had reached a point at which it had become so severely contracted that she could not straighten it. So, along with the drugs, Aspen’s nightly routine included 15 minutes of arm and leg stretching. Kevin said she would cry every night. But she responded well to the drugs, and is now down to just one shot a week.
“She calls the shots ‘pokies,’” Kevin said. “It used to be really hard to give them to her because she didn’t know what was going on and they hurt. But now she understands what they are, so it’s much easier. She says, ‘I know it’s Sunday, I’m going to get my pokie.’ But she also knows there’s a piece of chocolate right after it.”
Arthritis affects nearly 300,000 children in the United States. Kevin and Amanda have formed relationships with other parents of children suffering from the condition. They know of another child who did not respond well to the drugs and had to get a knee replacement at age 10. The child will soon need another one.
“I can live with a flare-up every month and a half and she’s out of commission for a couple days,” Kevin said. “But getting your 10-year-old’s knee replaced, that’s really tough.”
While Aspen has not faced such adversity as needing a knee replacement, her mother said she “is still at high risk of getting uveitis and goes to the optometrist every three months for checkups to make sure she doesn’t have it as it is a symptomless disease. You would never know she had it until it was too late.”
It is important for Aspen to remain active and keep her joints moving. That is why her parents have her involved in many activities. Aspen said in an interview that she likes swimming and diving the best. But she also noted later that she likes to play soccer.
Aspen is an adorable young child with beautiful blonde hair. An artist in training, she likes to draw portraits. Shortly after this reporter arrived for the interview, Aspen took out crayon and paper and went to work. As she drew, Aspen glanced up several times and squinted as she soaked in the details to get her masterpiece just right. Upon completion, she proudly displayed her work. She then went back to draw several more copies, taking a break between each round to do some running through the house. She also showed her acrobatic skills on a large beanbag in the living room, doing backflips and performing jumps from a slightly elevated point onto the bag.
“We have her very active,” Kevin said. “You’d think the opposite. But if she has an attack, she just can’t be active for a two- to three-day period until the inflammation goes down. But then she’s back at it.”
A student at the Children’s Creative workshop preschool in Point Dume, Aspen lives a life like any other child. She is a popular girl. When asked to name her best friend, she had a long list of names to tell. Her popularity and charisma made her a perfect candidate to be one of the honorees for the Arthritis Walk, which will take place at the Santa Monica Pier. When asked what she plans to do, she said, “Walk!” She nodded in agreement when her dad asked her if she also plans to shake hands and thank people for attending.
“There are two reasons I wanted to have Aspen participate in this amazing event,” Amanda wrote in an e-mail. “Number one was to turn a devastating situation for our family into an opportunity to raise awareness about juvenile arthritis and to raise funds for an amazing organization that has been an superb support system. Number two is to teach Aspen and other children with arthritis that exercise should be a priority and a joy! Our motto is to ‘Feel great, stay fit and keep moving!”
The event will raise money for the Arthritis Foundation and its various programs, including Camp Esperanza at the Painted Turtle in Lake Hughes. The Painted Turtle is a camp co-founded by Malibu resident Lou Adler and provides free sessions for children with various diseases. The Esperanza session is for children with arthritis.
“It makes them feel a lot better about, ‘I have something, but other people have it too,’” Kevin said. “That really helps them out to accept that there’s something in their life that isn’t exactly normal.”
Amanda said their family has another motto: “Always keep trying and never give up!”
“We say that everyday to remind ourselves that everyday is a challenge, but as a family we can face it.”
The Arthritis Foundation event on June 5 at Santa Monica Beach will include a three-mile walk and a ceremony featuring entertainment, activities for children and adults and refreshments. For more information, including how to participate, call 323.954.5760 ext. 226 or go to www.losangelesarthritiswalk.org.