Seven years ago Sadie’s childhood came to a screeching halt when suddenly everything she approached caused unbearable pain. Lisa Stump, Sadie’s mother, remembers as if it was yesterday: “She went from being a bubbly sunshiny toddler to crying all the time, not allowing any one to even touch her but me, not even her dad.”

“You would never know she has it,” says Lisa Stump, mother of Sadie Pine.

She’s right. To watch nine-year-old Sadie leap, jump, or twirl—or even more extraordinarily, play the violin, which she’s been doing since age three—you would never understand what she’s been through, and what she does each day to keep pain away.

Sadie is an adorable, rosy-cheeked fourth-grader with golden-blond hair that matches her glowing enthusiasm, and an underlying determination—a prerequisite for any nine-year-old willing to spend an hour and a half every day after school practicing violin. She takes her musicianship seriously because she attends the Special Music School in New York City where all the children in her class are musically gifted. Sadie’s education revolves are around music and it shows when she plays; her hands are nimble with her instrument. Which is why she finds herself having to explain, a lot, that while the condition she lives with may not be obvious, it is very real. And she wants everyone to understand: “It’s not just grownups. It’s everyone who can get this.” The this Sadie is talking about is Juvenile Arthritis. (Though she pronounces it Arthur-itis”), something Sadie has endured since she was 18 months old.

Seven years ago Sadie’s childhood came to a screeching halt when suddenly everything she approached caused unbearable pain. Lisa Stump, Sadie’s mother, remembers as if it was yesterday: “She went from being a bubbly sunshiny toddler to crying all the time, not allowing any one to even touch her but me, not even her dad.”

Lisa and her husband Jacob were frightened. Their older child had never exhibited any of this, and as far as they were concerned it came out of left field. Even the doctors they consulted were baffled. “When it all began, Sadie only complained about discomfort in her ankle, and the medical professionals thought it was a soft-tissue injury,” Lisa explains, adding how very quickly it became evident something else was going on. “She just stopped walking and sat all the time and was miserable.” Soon it was not just her ankle causing constant agony.

Sadie’s family went to many specialists before they landed at Morgan Stanley Children’s Hospital in New York where they met Dr. Andrew Eichefield, a pediatric rheumatologist, who diagnosed Sadie with Juvenile Arthritis (JA) which is an autoimmune disease. Simply explained, this means the immune system, which ordinarily protects the body from foreign substances, attacks the body instead. The disease has no known cause, but many researchers think it might be linked to genetics and triggered by certain infections and environmental factors.

Once Sadie was properly diagnosed, Dr. Eichefield prescribed a combination of biologic medicines, which reduced her inflammation and lifted the pain. (Biologics are genetically engineered drugs made from a living organism, such as a virus, gene or protein, which will simulate the body’s natural response to infection and disease. They target proteins, cells and pathways responsible for the symptoms of different types of inflammatory arthritis.)

As Sadie’s family will tell you, the drugs seemed like a miracle cure. “It was like the sun came out,” Lisa says. “Almost overnight the pain was better.” But they quickly found out the struggle wasn’t over for Sadie. Experiencing the world as a source of chronic discomfort at such a young age created an understandable fear in the child, as Lisa recalls. “So much so that even walking from a room with carpet to a room with hard floor she would really stop there and look at it and be worried and very slowly put her foot over it because wasn’t sure if it would be painful to put her foot from one surface to another.”

And there is a constant worry that comes with living on medications that suppress the immune system, though Lisa says she has devised systems that help. “Her teachers tell me if someone is sick in class. And parents will alert me if we have a playdate and their child has a cold. But I used to be very nervous about everything. Starting school, the germs she would be exposed to if a kid in had chicken pox or measles. We would have to pull her out of school because she’s not able to get all the vaccinations; some are made from live viruses, which she can’t get. If she is exposed to somebody with something she either has to be taken off medication to allow her immune system to build back up or take her out of school. It’s made me a lot more aware of everything going on around me all the time.” Still the biologics are an undeniable blessing. “Without the drugs she couldn’t be herself. She couldn’t pick up a pencil.”

Along with the medical treatments, it took a lot of dedicated parenting, and steady physical and occupational therapy, to help Sadie return to the enjoyable activities of a young child. Early on her core muscles were weak and she was reluctant to do things. Now her biggest challenges are fine motor skills, such as using buttons and putting pressure on snaps. But, again, you would be hard-pressed to know this when you see Sadie participate in athletic classes at school, or leap fearlessly from the lifeguard chair at her beloved beach club where the family swims during the summer.

sadie-jump

Sadie leaping fearlessly from the lifeguard chair at her beloved beach club.

Some 300,000 children in the United States have JA, according to the Arthritis Foundation. And what you discover, when you meet a young person like Sadie living with JA, is that there is something remarkably heroic about the ways in which she has learned to cope. Sadie has a very stoic perspective: “I see my doctor a lot and get weekly injections and take pills every day so I can walk and get around. Even with my injections, I sometimes get flare-ups that make me hurt and not want to do anything. If I miss a shot, I can feel arthritis in my joints.”

Since there is no obvious evidence of arthritis when you meet Sadie, she has come to be, by default, an ambassador who must educate others. “Arthritis is something everybody can get, not just grownups, not just kids. And there’s not just one type of arthritis,” she says, before adding, “some people don’t understand. Some people just think it’s not very important thing. And they are not worried about it. But you can get it for no reason.”

In other words, bad things happen to good people. And that includes kids.

But Sadie and her family focus on the positive, not the negative. They are grateful for the treatments she’s received, the guidance of her doctor, and the generosity of the Arthritis Foundation that educates families about how to improve their children’s lives. “They helped us find options out there. Everything from the latest developments for medications to legal things, learning about your rights as parents and education seminars,” Lisa explains. They even funded tap dance lessons for Sadie to keep her active, because exercise can be an effective tool in the battle against arthritis.

Lisa Stump and daughter Sadie at the 5K Arthritis Foundation walk

Lisa Stump and daughter Sadie at the 5K Arthritis Foundation walk

“One of the good things about my arthritis is that I go to the Arthritis Foundation events where I can meet other kids who have the same challenges as me,” Sadie says. For the past five years she has proudly attended the Arthritis Foundation’s 5K walk to help cure Juvenile Arthritis. Experiencing JA has also given Sadie, at a young age, the ability to express great compassion through a wish she has for others: “I hope someday they can help people so they never know what it is like to feel the pain of arthritis that I feel.”

For more information visit www.kidsgetarthritistoo.org

Click here to make a pledge for Sadie at the Arthritis Foundation.

 


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