A Pain Fighter Since Birth
Twelve-year-old Madi Begley is a spirited warrior who refuses to let physical challenges or pain dictate her life. Born nine weeks premature, she has been fighting since birth. It is this determined, can-do attitude that helps Madi thrive in every situation.
The first four years of Madi’s life were spent in and out of the hospital due to failure to thrive and severe gastrointestinal issues (including reflux and a non-functioning colon). She underwent surgeries to repair her hernia, and received high doses of laxatives to aid in bowel movements. Because she needed extremely loose stools in order to pass the excrement, Madi had to wear Depends until she was eight years old. By the age of nine, she had undergone five surgeries.
Thriving through sports—despite injuries
By nine, Madi had already handled more health issues than most people experience in a lifetime. But you would never have known it: She was a happy, sweet kid with a love for watching major league baseball and playing softball. An athlete through and through, Madi was in her element on the softball field, in the pool, surfing or on a bike.
During fourth grade, Madi began breaking bones. One evening after softball practice, Madi experienced intense, knife-stabbing pain in her right foot; the pain was so intense, her dad had to carry her off the field. She had fractured a growth plate in her heel. Madi’s orthopedist gave her a cast and said her foot would be healed in a few weeks.
But one cast evolved into four casts and then a boot, totaling five months of immobilization. Once in the boot, she began biweekly physical therapy… but six months later, Madi still was reeling with pain. In the next eight months, Madi broke all the carpal bones in her right wrist, developed Sever’s Disease in her right foot, and broke her collarbone twice.
Despite her agony, Madi played through the pain, sidelined from softball only once for three weeks due to a broken collarbone. She played in casts, boots, compression sleeves and ace bandages.
Though she missed most of the school year, Madi maintained straight A’s, with assistance from her school and Section 504 (a federal law that protects the rights of students with disabilities). Still, she worried about retaining her knowledge—and made the difficult decision to repeat the grade.
CRPS: complex regional pain syndrome
Madi’s parents consistently took action, becoming tireless advocates, cheerleaders when she needed encouragement, and her voice in the health care system—ensuring the best care possible.
A battery of specialists, examinations and tests yielded diagnoses of complex regional pain syndrome (CRPS) and shallow bone syndrome (bones break easily). Doctors also discovered an accessory bone in Madi’s right foot caused by Accessory Navicular Syndrome, which causes severe pain with repetitive motions like running, jumping rope or walking distances.
CRPS is a chronic neurological syndrome characterized by severe burning pain, pathological changes to the bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. Madi describes it to peers as a disease that means if she gets injured, her pain will be worse because her nerves are crazy. Madi experienced throbbing, stabbing and burning pain that caused her right foot and heel to turn blue and swell.
At first, Madi was terrified; just one year before, her mom had battled CRPS symptoms that took her away from the family. Now in the same kind of pain herself, Madi feared she would have to face the same challenges—and agonies—her mom did in order to recover.
Tireless pursuit of pain relief
But knowing her mom overcame CRPS gave Madi hope. She made a promise to herself that the disease would NOT beat her; she would never give up or let it destroy her life. She used the pain to fuel her fight. She looked for the positive in every situation. Whatever happened, she would get through it.
Madi focused on recovery. She knew pain was likely a lifelong experience, but it wouldn’t stop her from doing what she loved. She continued to attend every softball practice and game to support her team from the sidelines. She developed a passion for cooking, helping her mom make meals and desserts. She pursued artistic leanings, finding pain relief and relaxation through creative expression (she taught herself how to draw using her left hand).
To reduce pain, Madi worked with an active release therapy (ART) practitioner. ART is a movement-based massage technique that treats muscles, tendons and nerves. Madi took Advil, Aleve, Naproxen and used anti-inflammatory creams like Arnica Cream and Volterin Gel on her skin. She had extensive physical therapy for her right foot, right wrist and elbow. She also had a personal trainer a few days a week, to help build strength in her previously injured limbs and core.
It was an excruciating journey—but worth it. After a year and a half of suffering, Madi experienced a CRPS remission.
Teamwork keeps Madi strong
Today, Madi stays active. She doesn’t worry about flare-ups or modifying her activities to avoid injuries; she has returned to her old life and favorite pastimes. If she does experience a flare—from weather changes or another broken bone—she immediately visits her ART practitioner, orthopedist and chiropractor. She uses heat, compression socks and sleeves, and Arnica cream for inflammation. Madi works through the pain—choosing not to fear the future, but to live for the present.
An enormous number of people are instrumental in Madi’s healing process. Her parents have been there from the beginning, fighting on Madi’s behalf when her strength wavered. Madi’s sister brightened her spirits, picked up her schoolwork, and helped her to never feel alone. Madi’s school and teachers are extremely supportive, striving to make learning conducive to healing. And Madi has been surrounded by attentive, understanding doctors who are invested in her care and wellbeing.
Pain awareness advocacy
Madi’s life now revolves around being a kid: being silly and laughing, having sleepovers with friends, playing with her dog, going to school and playing softball. She recognizes how fortunate she is to be doing well, and makes pain awareness and fundraising for rare diseases a priority.
In 2013, Madi started organizing an annual Pain Awareness and Rare Disease Day at her school. Each year, she makes morning school-wide announcements explaining CRPS and other rare diseases. She also created a fundraising page called “Madi Makes Your Small Change Matter,” to raise funds from her peers for the Reflex Sympathetic Dystrophy Syndrome Association.
Madi’s softball team supports the cause, wearing CRPS t-shirts to support the Achilles Walk and promote CRPS awareness. In September 2014, Madi participated in a Facebook photo challenge awareness campaign, wearing orange CRPS t-shirts to school and educating other students.
She has also written articles and a children’s book about CRPS and her pain journey. And she was a keynote speaker at a CRPS conference, answering questions about going to school with pain. Her goal is to continue to shed light on pediatric pain and bring hope to others; she wants other kids to know they are not alone and that they can still laugh and enjoy life.
Madi is a prime example of how a person can make a fundamental difference at any age. Not one to let obstacles control her life, Madi continues to find ways to live despite pain. She is tenacious, with a warrior mentality.
“I know I am a miracle, and I choose to live an adventurous life,” says Madi. “I am determined to succeed, believing I am invincible. Nothing will stop me from doing what I love. Whatever happens, I will find a way to get through it.”
RSDSA – www.rsds.org
Active Release Treatment – www.activerelease.com