Diagnosed at age 3 with Myelodysplastic Syndrome (MDS), a form of leukemia that is incredibly rare in children, Madeline & Hannah Ritter are now graduating high school.
The prematurely-born twins were diagnosed with the rare disease after toddler Hannah was hospitalized for a fever-induced seizure. The twins had experienced health problems since birth but doctors had no reason to suspect MDS. According to the Mayo Clinic, most people with the disease are in their 70s or 80s. the girls were treated with chemotherapy and radiation therapy, along with a life-saving stem cell transplant from an anonymous donor in Germany.
Today, the twins are cancer-free but they suffer from significant late effects from the same harsh treatments that saved their lives.
Health Care Battles
The Ritter family knew going into treatment that they would hit their insurance cap before treatment ended, particularly considering the high cost of a stem cell transplant. Fortunately for their family, a state program in Pennsylvania served as a secondary insurance and covered the rest of the treatment needs for the girls. The state program helped pay for follow-up appointments, transfusions, I.V. nutrition, anti-rejection medicines and more. But with a son and baby daughter, the bills kept mounting. With out-of-pocket costs around $800 a month, the family was forced to file bankruptcy.
The financial effects of the health insurance burden were felt beyond the confines of the Ritter family: the employer of the twins' father Benjamin - who provides the family's primary insurance - was unable to re-sign the same insurance the following year because the Ritters had cost the insurance company too much money during the girls' treatment. The employer was forced to find a new insurance plan, which cost more and covered less - not just for the Ritters but for all of Benjamin's coworkers. "Everyone employed at this company was being punished with higher costs and less coverage becasue my kids got cancer," Stacie said.
After treatment, Stacie and Benjamin were unable to afford the co-pays for the therapy recommended by the twins' doctors, and the insurance company denied coverage for the growth hormone therapy the girls needed to physically catch up with their peers.
The Affordable Care Act came too late to help the Ritter family with their treatment, but its provisions will help protect the girls as they enter young adulthood. They'll be able to stay on their parents' plan longer, they won't be denied coverage because of their pre-existing conditions, and they'll never hit a lifetime cap for care.
Late Effects that Linger
Today, Stacie and Benjamin are equal parts grateful and proud. Madeline and Hannah will be starting their college careers at Arcadia University in Fall 2017.
Madeline plans on studying linguistics, with a minor in international affairs. She is in her 5th year of Spanish, 2nd year of French and she taught herself Arabic with Rosetta Stone! She plays the Ukulele and finished high school as part of the music honors society, art honors society and theater.
Hannah also enjoys languages, taking two years of German in high school. She is a talented artist, writer, and singer, with a love of theater and vocal performance. She plans to study sociology at Arcadia.
The girls' accomplishments are all the more impressive because of the significant challenges they continue to face as a result of their cancer treatment so many years ago. Treatment took a big toll on their growth: the 18-year-olds are about 4'9" tall, despite hormone replacement therapy.
Stacie doesn't mind one bit that they are small. "I'm just happy they are alive."
"But in their world, it is a big hardship. They are treated like they're 12 years old, even by their peers. It's a constant struggle for them because they feel like no one takes them seriously because of their size.
In addition to their physical growth challenges, cognitive late-effects have also been damaging to their self-esteem. Both girls need extra time for assignments and tests. Every year has been like Groundhog Day: there is always a teacher or two that doesn't understand the time management problem isn't because they're irresponsible.
The worst part, for them and for me, has been the bullying. Starting in 5th grade, they've been left out, ignored, called names and treated terribly at school. Hannah used to have a smile on her face everyday -- until the kids at school started riddling her for it. The school was no help: they suggested I home-school them. Seriously?
The girls are old souls: kind and happy. They don't engage in typical high school drama. I struggled to find a good child therapist for them. Our saving grace has been Ronald McDonald Camp, a week-long camp for kids with cancer and their siblings. Only there do they feel 100% understood, loved and accepted by their peers. It's the best week of their lives, every year!"
When you talk to Stacie Ritter about her girls, you'll hear joy and pride about the strong woman they have become.
You'll also hear frustration: It shouldn't have been so hard for them.
"Life could have been much better with more support from the school, with a staff better-educated about long-term health effects," Stacie says. "There is a big unmet need for counselors that work with childhood cancer survivors and their families. Parents need more support, too."
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Stacie is an outspoken and passionate advocate for kids with cancer and their families. She speaks to the media, to Congress, to patient advocacy groups -- to anyone who will listen.
She knows that she is fortunate to have healthy young adult survivors today, despite the many battles along the way: The insurance battles. The school battles. The late effects battles.
She wants to help other families who face the same storm her family has weathered.
"We're a small club that no one ever wants to be a part of, and we hope and pray for the day when we have no new members."