When her daughter Minwa Alhamad was just a baby, Dalal Alrefaei noticed something: One of Minwa’s legs wouldn’t bend. The little girl didn’t cry or seem to be in pain, but her knee was hot and swollen. After taking her to a hospital near their home in Kuwait City, doctors told Dalal that Minwa may have had the flu and prescribed ibuprofen.
Symptoms improved slightly over the next few days but when Minwa began to walk, Dalal noticed that her heel didn’t touch the floor. This time, her doctors said it might be something muscular, but didn’t have an answer. Dalal took Minwa to Germany for another diagnosis, but to no avail. After six years of testing, imaging and intense physical therapy, Minwa’s knee was still troublesome, and the doctors in Germany said they had never seen anything like it.
In 2007, Dalal took Minwa to the doctors for stomach problems and vomiting, and her physician immediately noticed the difference between both her knees, ultimately resulting in a diagnosis of rheumatoid arthritis. After three months of fruitless treatment, her doctor sampled the liquid from the swollen knee and referred them to Boston Children’s Hospital.
Finally in Boston, Lyle Micheli, MD, and Samantha Spencer, MD, diagnosed Minwa with an extremely rare vascular malformation that prohibited her knee from working properly. It also caused her extreme pain, all day and night, prohibiting her from playing with friends, walking or going to school.
Surgery showed that the tumor would be hard to remove completely, but that a strong rehabilitation regimen could help Minwa regain control over her daily activities and enjoy life more. “The surgery went well, but Minwa’s recovery has been that much better due to her hard work,” says Micheli. “With her positive outlook and her persistence at physical therapy, she’s getting around much better.”
Minwa’s strong positive attitude has led to a much higher quality of life, and she has learned valuable coping mechanisms at Boston Children’s Pediatric Pain Rehabilitation Center (PPRC) — an intensive interdisciplinary rehabilitation program that serves the needs of children and adolescents with chronic musculoskeletal and neuropathic pain.
On a daily basis, Minwa attends physical therapy and occupational therapy, where she learns to move around more easily and accomplish everyday physical tasks. “It’s helped me a lot,” says Minwa, now 13 years old. “It’s been a long time since I’ve been able to help out at home, and now I can do things like the laundry or lift something.”
Household chores aren’t the only things Minwa can do now. While she typically uses a wheelchair or crutches, she and her mother are enjoying the Boston area, taking day trips to Provincetown and Newport, and Minwa’s favorite — shopping on Newbury Street.
“I try to let her know that even though she has pain, she can still enjoy life. We get out and enjoy the sun, the beach and simple things,” says Dalal. “Even though she is in pain, she is strong enough to find a way to enjoy her time. She can do anything once she sets her mind to it. I’ve encouraged her to be thankful to God for all that she has.”
For most adolescents, being an ocean away from the rest of their family and managing daily chronic pain might make them shy away from social activity, but Minwa is far beyond the normal teenager. She has fostered friendships through her online homeschooling program and built relationships with other girls at the PPRC. “It was so easy to make friends there, and I didn’t have to explain anything because we all knew what the other person was going through,” says Minwa.
Playing board games has been another surprising way to ease her pain and brighten a day. “It really helps, and it’s so fun. Everyone wants to win, and you’re constantly focusing. Some people get that from running; I get it from board games and drawing,” she says.
Drawing — originally suggested by the PPRC — has become more than just a hobby, but a form of therapy for Minwa. “I have always drawn with pencils, but they taught me to draw with color because it shows your mood. If you’re using red, you might be angry. After you’ve completed a picture, you know what you’re experiencing,” she explains.
To further manage her symptoms, Minwa also gets acupuncture. “At first, I was scared of the needles, but it was so relaxing. It just feels like positive energy is everywhere,” she says.
Minwa’s optimism and hard work have helped her tremendously, making this 13-year-old girl become a savvy young woman. “She is so poised, articulate and well-mannered. She asks wise and appropriate questions. Her attitude is mature, and I know she’ll continue to succeed,” says Micheli.
“Because of this, I am stronger, and I can do something unique,” says Minwa. “I have been helped so much that now I know how to feel other people’s pain and help them feel better too. Because I’ve done it for myself.”
– Andrea Mooney