How a "Perfect" Life Can Include Down Syndrome and Cancer
In the April issue of Parents, we explore the world of special needs--a world we're all living in, diagnosis or not, now that children of all abilities are integrated into our communities more than ever. We'll be covering this topic in many ways over the coming weeks. Today, we hear from a mom named Beth Herrington, who has two 3-year-old daughters with Down syndrome and has a truly remarkable story.
Chloe was born with Down syndrome. Her diagnosis at birth took us by surprise, and led us on a journey that few would choose in their lifetime. When Chloe was only 2 weeks old we met a family that had recently adopted a baby girl with Down syndrome from Ukraine. They had adopted the baby through an organization called Reece's Rainbow. With a little research, I soon discovered the desperate plight of children born with Down syndrome in many foreign countries: Most are put into orphanages at birth and fail to thrive. When they turn 4 years old, they age out of the orphanages and are sent to mental institutions, where they are hopelessly neglected. They never get the chance to know the love of a family.
Chloe's birth gave us new direction. Our eyes were opened. Loving her expanded our hearts and gave us a special love for children born with disabilities. We knew this child we held in our arms, just like the four who had come before her, was perfect! And we knew in our hearts that our family was not yet complete. After months of soul searching, and scouring the Reece's Rainbow web site, a picture of a baby girl with Down syndrome caught our eye. Eighteen months later we were on a plane heading to the Ukraine on a rescue mission we called Operation Olivia!
My husband and I spent 7 weeks in the Ukraine bonding with Olivia and finalizing her adoption. While we were there my sister, who was caring for other children, alerted me that Chloe was not feeling well. A checkup with the pediatrician included blood work with concerning results--Chloe had a very low platelet count. The doctor told us that we did not have to rush home, but that as soon as we came back from Ukraine they wanted to do a bone marrow biopsy on Chloe.
We came home with Olivia a few weeks later--fearing the whole time that we were about to jump head-first into a battle that no parent ever wants to fight. Our worst fears were confirmed: Chloe's bone-marrow biopsy revealed that she had leukemia.
Chloe spent the next nine months in a Kaiser Hospital isolation room fighting to survive Leukemia and very aggressive chemotherapy. And fight she did! Turns out that kids with Down syndrome have awesome cancer fighting genes! (They actually do: There is a genetic mutation found only in children with Down syndrome that increases their risk of developing certain types of leukemia--and crazily enough, that very same mutation is responsible for helping children with Down syndrome respond so well to the cancer-fighting treatment plans! Also, the relapse rate of children with Down syndrome is significantly lower that that of the typical child who has gone through the same treatment.) In May of 2013 she walked out of that hospital cancer-free; this is what she looked like during treatment.
Early on my journey as Chloe's mom, I connected with a blogger/photographer and fellow Down syndrome mom named Kelle Hampton. We became Facebook and Instagram friends and she was a great source of love and support for me during Chloe's cancer journey. Last year on her blog, Enjoying the Small Things, she shared a project she was working on with the Infantino and Step2 companies, which make toys and products for babies and young children. They were planning a photo shoot to promote their products and asked parents to write an essay about how their child has taught them to look beyond a disability. What sparked my interest was that they were looking specifically for child models with special needs. The campaign was called "Everybody Plays" and Kelle Hampton was going to be the photographer. I wrote a quick essay about Chloe, how she inspired us to adopt her sister Olivia, and how, through her fierce battle with leukemia, she inspired thousands across the world to live their lives to the fullest. I attached a photo and hit Send.
A few months later I received a phone call from Kelle and a representative from both companies informing me that Chloe was among the 50 children selected to participate in the photo shoot--and as the grand-prize winner, we were flown to San Diego for a two-day, all-expenses-paid trip. We met Kelle and representatives from Infantino and Step2 companies. During our two days there we were moved by the beauty surrounding the event and the stories behind every child there. I'm sure I can speak for all parents there when I say the experience was one that will never be forgotten. For two days we laughed, cried, and spent hours watching our children just be children. There were no stares, no stereotypes, and no disabilities. There were just children in their perfect ways teaching all of us how EVERYBODY PLAYS!
Today both Chloe and Olivia are happy, healthy 3-year-olds. They are attending preschool and continue to thrive. Every day they amaze us with their abilities. Every day they make us smile. And every day they make us aware that true perfection dwells in them.
Over the last 2 years, through both our adoption and cancer journeys we have experienced an outpouring of love and support from family, friends, our local Down syndrome community, and from strangers far and wide. Thank you all from the bottom of our hearts. And thank you, Chloe and Olivia, for showing us how really perfect life can be.