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.
After a year of living in pain, high schooler Niki Karpouza is back to herself and enjoying her summer in her home country Greece.
The stomach pain 14-year-old Niki Karpouza was experiencing was so excruciating, she couldn’t eat, had to give up gymnastics and ultimately missed 350 days of school in her hometown on the island of Crete, Greece.
The culprit: a rare vascular condition that had led to the narrowing of multiple intestinal arteries and their branches, preventing blood from flowing to her intestines like it was supposed to.
Several doctor visits and medications in Greece didn’t help. Doctors there reached out to the University of Michigan’s C.S. Mott Children’s Hospital that has one of the leading multidisciplinary programs for comprehensive treatment of vascular disease. The program is an international referral center for children with complex vascular disease and handles approximately 80 percent of cases requiring surgery in the U.S.
I’ve seen you in those hospital rooms. I’ve seen you hand your child off to surgeons, not knowing if you would ever get to hold them again with a beating heart. I’ve seen you pray, hope, and hold on to faith with a sheer will that would put most to shame. I’ve seen you hold your baby with tears streaming down your face because this kind of sickness isn’t the kind that just comes and goes, this is the kind where no one can assure you that your child is going to be okay.
You fight for your children when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child. You take part in care for your child in ways even some in the medical field are intimidated by – dropping NG tubes, changing trachs, giving IV meds through a Broviac at home.
You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist. Continue reading →
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