champions

By Amy Hackworth. Images by Kirstin Roper.

Imagine your daughter’s flu-like symptoms turn out to be something much more serious and within hours, you learn she’s in heart failure and will need a transplant. Or your little equestrian is kicked in the head by a horse one afternoon at the trainer’s and suddenly you’re only thinking of the next minutes and hours of her life, questioning the hope of coming days and years. Or imagine that a sudden bulge in your daughter’s cheek turns out to be an aggressive Stage IV tumor, the thing you feared most when you took her to the doctor.

Now imagine that as your world is being changed forever, as you are sobered and overwhelmed and frightened, your child is being treated at a facility that’s specifically designed for pediatric care — a children’s hospital that can meet all of your needs, from the best possible care for your little patient to the most supportive and helpful environment for your thousand-and-one questions and fears. As medical protocols and procedures become part of your everyday vocabulary, the children’s hospital where your child is being cared for begins to feel like home, and the staff begins to feel like family.

These are the stories I heard a few weeks ago when I joined the Children’s Miracle Network Hospitals on a trip to celebrate their Champions — a group of kids and their families (one from each state) who are heroes of bravery and courage. Morgan’s heart transplant was successful, and two years later she is the whirlwind of energy you’d expect any 5-year-old would be. Greer was fortunate enough to find the world’s foremost pediatric craniofacial expert at her children’s hospital, and less than a year after her accident she is literally back in the saddle, riding and competing again. And darling Jordyn is in complete remission now, looking forward to a baby brother in January and planning a career in medicine.

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These are just three of the stories I heard, and the forty-seven others represent thousands of kids across the country. Some of them have overcome a devastating injury or illness; others are still recovering. They’re kids who’ve gotten better, and some who won’t get better. Many of these children are in remission or fully recovered, and many of them will continue to face challenges everyday of their lives, but they keep up with their snowboard competitions, go to cheer practice, apply for college and pursue their dreams.

They are stories I couldn’t listen to without wide eyes and a few tears, and they are kids who amazed me with the bravery and joy that radiated from their brightest, happiest smiles. I learned so much from these kids and their parents about life, health, happiness, tenacity, attitude, faith, courage, joy, love and miracles. And I gained a new appreciation for the incredible role that children’s hospitals play in our communities. Receiving treatment at a children’s hospital means every aspect of your child’s care is being delivered by staff who are experts at caring for children—not just their medical needs, but their emotional needs, too. These families spoke about their local children’s hospitals with appreciation and reverence, and I can understand why.

I also learned that our communities’ children’s hospitals survive on charitable donations, most of which happen a dollar at a time. Children’s Miracle Network Hospitals alone provide an incredible amount of charitable care: $6500 every minute, which totaled $3.4 billion in 2012. That’s a lot of money! And that money is serving kids and families in significant ways, like buying needed equipment, providing funds for pediatric research, respirators and monitors for the tiniest of newborns, dedicated pediatric CT scanners, genetic programs to identify hereditary conditions, insulin pumps, and necessities like distraction toys for painful treatments and craft supplies and support programs, not to mention financial help for underinsured families.

All of those things are purchased with donated dollars, and there are so many ways to help! Those checkout donations at grocery or drug stores add up to billions of dollars each year, and go directly to the nearest children’s hospitals. Dance Marathon is a great way for high schools or universities to have an incredible time raising money for great kids. Families can also raise money by playing video, board, or outdoor games as part of Extra Life. You can create your own holiday fundraiser, too — a bake sale or art sale or babysitting service and donate the proceeds directly to your children’s hospital. Or simply join an advocacy group that will help you know when to reach out to legislators as they make key decisions about children’s health issues.

If you’ve had an experience at a children’s hospital, I hope you’ll share it, and your ideas about supporting and funding our communities’ children’s hospitals.

P.S. — You shared so many great ideas about supporting our friends whose children are in the hospital in this post a few months ago.