After 16 years of fighting a rare, life-threatening disease, Derek Gropp finally met the organ donor who would save his life – his 3-year-old brother Christopher.
Derek was born with Kostmann Syndrome (or commonly known as Severe Congenital Neutropenia), which prevents the body from producing white blood cells critical to fighting infections and makes even a common cold or ear infection potentially fatal. The disease eventually can transform into leukemia, and his family knew that Derek may need a bone marrow transplant someday.
Then along came Christopher, who proved to be nearly a perfect match for his big brother. But the case presented unique challenges because at just 40 pounds, preschooler Christopher was nearly a third the size of his 16-year-old, 150-pound brother.
Photo courtesy of Lindsay Wilkinson Photography: (From left to right) Kaine, Thomas, Maddie and Brody have given their 1st grade classroom the nickname “Miracle Class.”
The first grade class at St. Joseph School has become locally famous in the rural, one-stoplight village of Pewamo.
It’s the classroom of seven-year-old Thomas Kramer, who had his first of three open heart surgeries at three days old. There’s Brody Smith, who began fighting leukemia just as he was learning to talk. Kaine Simon underwent an hours- long surgery on his skull at five months old. And Madeline George’s biggest gift came two days after her first birthday: a new heart.
Their stories are what have earned Mrs. Connie Warczinsky’s classroom in this small town outside of Lansing an affectionate nickname: “The miracle class.”
A red patch of yarn dons the limbs of a stuffed Star Wars’ Chewbacca, pink dragon and polar bear lined up around 12-year-old Juliette Harrison.
The spots on Juliette’s handmade, crocheted animals represent the condition they share with their young creator: arthritis.
“They are like friends that kids can take to appointments, someone who is like them,” says the sixth grader, of Saline. “It makes me feel good that I can help other kids that are going through hard things too.”
Like many families, the reality of how fortunate we are to live near one of the country’s top ranked children’s hospitals was not something we ever really thought about. That all changed when Danno came into our lives.
During a routine ultrasound while I was pregnant with twins last year, the doctor discovered that the heart of one of the twins was not developing properly. We learned even before he was born that our son, Daniel (eventually nicknamed Danno after we all fell in love with our 2-year-old’s attempts to pronounce his baby brother’s name) had a congenital heart defect. The exact diagnosis was double outlet right ventricle with pulmonary atresia and a large ventricular septal defect. It’s a mouthful, and we were frightened, but knew we were in good hands at University of Michigan.
In early October, I was admitted to U-M’s Von Voigtlander Women’s Hospital because my twin boys were beginning to show signs of distress. The doctors decided to deliver them on October 27 at 34 weeks gestational age.
Essentially, SMA is the pediatric version of ALS (Lou Gehrig’s disease).
We were told that she wouldn’t live past 8 years old. She’s clearly blown right past that prediction – she is 18 now, and is an incredibly positive, optimistic young woman.
I’d love to say she hasn’t slown down a bit, but the truth is – she has. Erinne used to walk with the assistance of a walker, but the disease has progressed and limited her physical abilities. She now she uses a power wheelchair, needs assistance to feed herself and breathes with the help of a ventilator while she’s sleeping.
One of the challenges with this disease is managing Erinne’s pain. She has four rods in her spine and a dislocated tailbone that causes severe pain. We tried many avenues to manage the pain without much success until our care team suggested a referral to palliative care services.
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