Archive for April 11th, 2018

Family and fortitude helped Mary Miller overcome leukemia, and her inspiring fight could help change the future for thousands of more kids with Down syndrome facing the diagnosis.

Mary Miller, 13, of Finksburg, Maryland, is like a lot of girls her age. She loves school, swimming, making YouTube videos with her sisters, Lara and Sarah, and musical theater.

“My favorite thing about theater is the songs,” Mary said. “I like singing with my sisters.”

But at age 11, Mary’s full, vibrant life was interrupted by a leukemia diagnosis.

THE DIAGNOSIS: MUCH HIGHER IN CHILDREN WITH DOWN SYNDROME
Children with Down syndrome are 20 times more likely than typical children to develop acute lymphoblastic leukemia (ALL), also called acute lymphocytic leukemia. ALL is the most common childhood cancer and occurs when the bone marrow makes too many immature lymphocytes, a type of white blood cell, and spreads to the bloodstream. According to the nonprofit Cure Research For Childhood Cancer, ALL accounts for 25 percent of all cancers in children under age 15, and more than 3,000 new cases of ALL are diagnosed in children and adolescents in the U.S. each year.

Signs of childhood ALL include fatigue, anemia, weight loss, loss of appetite, fever, bone pain, swelling of the joints, enlarged lymph nodes, bleeding from the gums, and frequent infections. The type of doctor who treats blood cancers is called a hematologist-oncologist.

If a doctor suspects ALL or any leukemia in a child, most likely there will be blood tests, taking fluid from the bone marrow (bone marrow aspiration), and taking a small bit of bone and marrow (bone marrow biopsy). Treatment for ALL may include chemotherapy, immunotherapy, or targeted drugs that kill cancer cells.

FROM DESPAIR TO HOPE
Generally, the illness strikes children before age 5, so Mary’s diagnosis at 11 came as a shock to her parents, Jake and Jane, despite the higher risk she faced.

“Even as a nurse educator for Down syndrome, I was sucker punched,” said Jane, who coincidentally is an oncology nurse.

She learned of a Facebook group called Down Syndrome and Leukemia through another mother of a child also with Down syndrome and leukemia. Connecting with other parents whose children were going through what Mary was going through was a lifesaver, Jane said.

Through the Facebook group, Jane and Jake learned that many children with Down syndrome do not get a diagnosis as soon as they could. She learned many helpful care pointers, such as how to help with Mary’s head rash from her pillow by using a special port dress instead of a typical adhesive dressing, which can cause irritation, especially for people with Down syndrome, who tend to have more sensitive skin. She also found hope in a close friend, Cathy Fonfara-LaRose, whom she’d met through the Down Syndrome Connection in Maryland. Cathy’s daughter, Charlotte, and Mary had become friends at the Global Down Syndrome Foundation’s 2014 Be Beautiful Be Yourself Fashion Show in Washington, D.C.

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Wanting to help Mary, as well as all the other kids with Down syndrome at risk for leukemia, Fonfara – LaRose worked with Global to establish the Mary Miller & Charlotte Fonfara-LaRose Down Syndrome & Leukemia Research Fund. The fund is underwriting a grant for Joaquín Espinosa, Ph.D., and his team at the Linda Crnic Institute for Down Syndrome, testing the effectiveness of drugs that inhibit two genetic mutations (MDM2 and CDK8) that cause uncontrolled cellular growth and proliferation linked to leukemia.

“This grant could really be the catalyst for some great research development with Down syndrome and leukemia,” Jane said.

A BRIGHT FUTURE
After two and a half years of grueling cancer therapies, including more than 200 nights in the hospital, Mary finished treatment in November 2017. She’s looking forward to a future that includes going to college and opening a restaurant with her father.

“Beating leukemia is the best,” Mary said. “I’m glad I don’t have procedures and that I don’t have to stay in the hospital.”

Throughout her entire journey, Mary’s parents marveled at her fortitude and determination.

“She doesn’t give up. She is optimistic in a w ay that is beyond my understanding, considering what she’s been through,” Jane said. “She’s a fighter.”

BRAVE, FUN, AND BEAUTIFUL
Thirteen-year-old Mary Miller was born to perform. One of the YouTube videos her sisters helped her create has nearly 50,000 views, and she didn’t let a cancer diagnosis get in the way of making more.

“I like making [YouTube videos] because they make people happy,” Mary said.

Now finished with cancer treatments, Mary wants other people with Down syndrome to learn what it takes to perform with grace: “They can learn to be brave and fun and that they are beautiful,” she said.

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