Article originally appeared in Atlanta Parent Magazine, August 2007

by Tali Toland

Imagine waking up one morning and your whole world turns upside down. That happens too often to parents whose children suddenly develop a chronic illness. Chronic illnesses in children affect so many aspects of life that those who aren’t personally involved may not understand how treatment and management of the disorder can quickly overwhelm a family. Atlanta Parent spoke to a few of these families – here are their stories.

Five-year-old Gabrielle has had her share of doctor’s visits. Diagnosed with juvenile arthritis at age 2, Gabrielle makes constant visits to the doctor’s office to ensure her medicines are keeping this autoimmune disease under control. “We noticed her dragging her left leg behind her when she first woke up each morning,” explains Gabrielle’s father, Steve. “Then we started to notice swelling; her kneecap was the size of a softball. It was giving off heat and other signs of inflammation.”

There are three main types of JA or JRA, and Gabrielle’s type only affects about 10 percent of kids with the disease. “We found out about the eyeritis portion of JA when Gabrielle was about 3½,” says Steve, “when her irises became inflamed from the JA attacking her eyes.” This symptom of JA is potentially blinding. If eyeritis isn’t eradicated in a child before he or she turns 7 or 8, when eye-brain connections mature, there are extreme long-term effects. “We’re working extremely hard to keep the JA out of Gabrielle’s eyes right now,” says Steve. “That way she’ll have a better chance at normal eyesight as an adult.”

“The biggest issue with JA is that it’s chronic; it never goes away,” says Steve. JA is a disease that attacks the healthy tissue in the joints. Why isn’t known. “It’s treatable, but it takes work and effort,” says Steve. “JA hits all the joints.”

“The goal with JA is to get it into remission,” says Steve. “NSAIDs are the meds they put children with juvenile arthritis on.” If those don’t work, they next step is immunosuppressant chemotherapy. The chemotherapy drugs attempt to get the immune system to stop attacking healthy tissues. “The use of these drugs has started to keep JA kids out of wheelchairs, but it’s a tough drug and the side effects are rough,” explains Steve. “Typical chemo side effects come along with these meds – hair falling out, as well as stomach and liver problems are possibilities. Gabrielle has her blood drawn to check levels and monitor the chemo’s effect.”

“We’ve dealt with the JA in stages. Initially, you deal with the disease. Then it’s the disease and the meds. Finally, you move to the hope that the choices you’ve made will make it better,” says Steve. “If you can find other families that are ahead of you and behind you in the process, it helps you get through things. Reaching out and helping, making suggestions to other families makes you feel less alone.”

Life with JA is a constant balancing act. “Treatments are getting better, so the quality of life is getting better for Gabrielle and other kids with JA,” says Steve. “Juvenile arthritis can be crippling – kids can lose the use of limbs. Many kids have leg-length discrepancy. The pain and fatigue seem to be the most noticeable on a day-to-day basis, and that’s what hurts them in school the most.”

“We’ve tried not to define Gabrielle by JA,” says Steve. “We want her to be a great kid who happens to have JA. We try to let her do everything she wants to do. She’s a great dancer. It brings tears to our eyes when she dances because we remember when walking might not have been a possibility.”

“Having a child with a chronic illness definitely challenges and strengthens faith. You have to keep moving on,” says Steve. “You try to have Gabrielle understand JA, but it’s hard when she asks: ‘What’s wrong with me?’ There are times you don’t want to deal with it. You have to rely on friends and family, but most of all your faith. You have to remember that we can’t control this. You just do the best you can.”

For the DeGiuli family, epilepsy has its hold on two of three children. Madison, 11, and Grant, 5, are both affected by this chronic illness. Madison was diagnosed in kindergarten. “She fell to her knees and her little finger was pointing up at dinner one night,” explains her mom, Christine. “And then on vacation a few days later, she began having multiple seizures in a row. One minute Madison was fine, a beaming bright child, and then in a blink of an eye, our lives were changed forever.”

Little brother Grant’s epilepsy is not nearly as severe as Madison’s. “His first seizure was in November, and he’s only had two,” says Christine. “He was just laying on the couch; he went stiff and starting shaking.”
Seizures are caused by different disorders, and Madison’s disorder is more severe. “It took us about four and a half years to get it where she only has seizures at night,” says Christine. Madison had to endure two brain surgeries and a cocktail of medications to get this relief.

“I have decided not to let epilepsy affect our daily lives. I have decided to let this be a positive experience for others, to help Madison be a stronger person. She can’t ride a school bus or do the same things as other kids,” says Christine. One thing Christine does each new school year is go to Madison’s class and educate the other kids about her daughter’s epilepsy. “This helps her be accepted,” says Christine. “She’s in a normal classroom; it helps her become more like every other child.”

Madison has overcome so much in her 11 years. Communication has been very hard for her because she lost a lot of time before her seizures became manageable. “The gap with her friends is very hard,” says Christine. “She was learning sign language at one point. Things are still difficult, but she’s really making strides. She never complains.”

When the subject of the future comes up, there are some things that her family wonders about. “Madison probably won’t ever be able to drive. We look for things she’ll be able to do to contribute to society,” says Christine. “I think marriage is even a possibility, if it’s the right person and I know he won’t take advantage of her.” Madison is already quite accomplished. She’s on the honor roll; she’s learning to ride a horse and cares for one that was abandoned; she has raised money for Children’s Healthcare of Atlanta. “She’s very loving, and once she sets her mind to something, she goes above and beyond.”

“When your child has a chronic illness, you have to make the decision to let your child enjoy life as normally as possible, despite the risks,” says Christine. “Her sister [age 8] and brother are very protective of her. If they see her make one weird move, they run to her. As parents, we’ve had to make a conscious effort to help the others find their own identity. You also have to have good friends around you.”

Chronic illnesses can affect children of all ages, but sometimes the onset of a condition doesn’t become apparent until the teens. This was the case for 18-year-old DaMonique Joy Dunbar.

The Dunbars moved to Atlanta in early December 2004, just after DaMonique’s 16th birthday. Around Christmas she was not feeling well and her parents thought she had the flu. “After a couple of days, she burst into tears and said that she was hurting all over her body, and her hands and feet were swollen,” says her mom, Tobie. DaMonique was diagnosed with lupus in January 2005.

“DaMonique’s daily life involves constant fatigue and pain,” says Tobie. “Her diet and meal/snack times are scheduled. She has to limit her exposure to sunlight because it can trigger a crisis.” DaMonique spent her junior and senior years of high school on the Hospital/Homebound Program.

“DaMonique has gone through some very serious battles with lupus and continues to fight daily,” says Tobie. “Six months after she was diagnosed with lupus, she developed kidney disease.” Lupus can attack organs such as kidneys as if they were foreign bodies. The IV chemotherapy DaMonique received to stop the attack on her kidneys was originally supposed to be a six-month process, but it turned into a year-and-a-half ordeal. “She was in and out of the hospital a lot that summer in 2005. It was the scariest time in our lives,” says Tobie. One long-term effect of DaMonique’s lupus is that she’s scarred from the neck down from sudden fluid gain from her kidney disease and corticosteroids.

The hardest part of dealing with lupus is that just when one problem resolves, another one seems to flare up. “When her kidneys finally started showing signs of improvement, DaMonique began to have trouble breathing,” explains Tobie. Besides the pain and new difficulties the new medicines caused, DaMonique’s primary source of pain was not being able to return to school for her senior year.

DaMonique has had problems with her hips, ankles and more during her battle with lupus, but that didn’t stop her from taking part in her high school graduation ceremony. “On June 2, 2007, she came into the Georgia World Congress Center riding in Gertrude [her wheelchair] as her class marched in,” says Tobie. When it was time for her row to stand, she stood with them. DaMonique waited her turn and walked, although with a noticeable limp, across the stage with a huge smile to receive her diploma. “She is a trooper!” brags Tobie.

Due to the toll lupus has already taken on DaMonique’s organs at such a young age, she will require long-term evaluations to monitor her health. “She is currently awaiting hip surgery and will always battle people staring at her scars,” says Tobie.

“DaMonique’s diagnosis was like a hard kick in the belly,” says Tobie. “We had to do some research and learn about lupus.”

For 14-year-old, upcoming high school freshman Alexandria, being a cheerleader next year is a feat most children can’t appreciate. Sure, making the cheerleading squad is always a challenge, but for someone who spent her entire eighth grade on the homebound program, it’s almost a miracle.

“Alexandria was diagnosed with Crohn’s Disease about three years ago,” says her father, John. “Most of her fifth-grade year, Alexandria complained that her stomach bothered her every morning. We brushed it off at first as not really wanting to go to school, and her being stressed out. Then she started losing weight, and we figured maybe something else was wrong.”

Crohn’s Disease is an ongoing disorder that causes inflammation of the digestive tract. “Alexandria experiences a lot of joint pain now, and she has to watch what she eats,” explains John. “The diet part of her disease is what affects the family the most. We try not to eat things she can’t eat.” Alexandria can’t eat roughage – that means no lettuce, spinach or other leafy greens. No nuts or seeds, even ones in fruits like strawberries. Alexandria has to eat white bread now instead of wheat, and she can’t consume corn. “She’s also lactose intolerant,” says John. “We aren’t sure if that’s because of the Crohn’s or not, but it really seems to bother her. We’re cautious of all her dietary restrictions now.”

Alexandria also deals with fatigue on a daily basis. “She doesn’t always feel as well as she used to,” says John. “There’s definitely extra concern about how she’s feeling, especially now that she’s headed back to school this year.”

Alexandria has overcome her disease due to her positive attitude. “She’s very vocal about her disease, and she’s willing to talk to other kids about it,” says John.

Long term, Alexandria’s condition could stay the same, or she may require more medical attention. Right now she’s on Remicade, an intravenous drug. “She goes every six weeks for about three hours at a time,” says John. “This may be something she has to do her whole life.” Alexandria has been through three surgeries in the last 13 months, and she’ll probably have more. “There is the fear down the road of more surgeries and dealing with that,” says John. “Too much removal of her small intestines is a possibility, and the ramifications that would bring may not be easy.”

Alexandria will always have dietary restrictions, and her joint pain may be lifelong, but so far she’s not letting it stop her. “Alex has spoken at a few of the Crohn’s and Colitis Foundation’s events and fundraisers,” says John. “And she’s beyond thrilled about cheerleading.” One thing that can help keep Alexandria’s symptoms at bay is reducing her stress level. “That’s easier said than done,” says John.