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Question of the Week

May 28, 2007

Hello!

Thousands of children (and teens) receive potentially life-threatening diagnoses each year.

"Diabetes was largely an unknown to the boy before a family trip to St. Louis in 2003 when Kamaal was taken to the emergency room after complaining of constant thirst and feeling ill. ... 'I got really scared,' Kamaal says. 'I was wondering what would happen to me.' The diabetes books that doctors gave the boy, with their big words and medical terminology, weren't much help. So Kamaal and his brother, Malcolm, were drawing one day and came up with a way to make it easier for kids to learn about diabetes and how to control the disease. 'We decided to do a comic book,' Kamaal says. 'We wanted it to be fun and educational.' ... Kamaal and Malcolm have sold and donated to diabetes groups about 90,000 copies of the comics and have given about half of their $135,000 in profits to diabetes causes, their parents said."
The Washington Times

When he was first diagnosed with Type 1 diabetes, in 2003, Kamaal was nine. He was scared and didn't understand what this diagnosis meant for him. Four years later, with the help of his younger brother, Kamaal has found a way to take control of the disease and help others do the same.

"As Ross struggled through chemo and began to re-enter life, a healing story emerged that yearned to be told, to allow our family to heal and give other families the inspiration to face their own healing journey. Ross's indomitable spirit and positive attitude seemed to inspire others to appreciate their lives, their families, and their own daily challenges. In the fall of 1999, at age 13, Ross was invited to be the luncheon speaker at the annual meeting of the Wisconsin State American Cancer Society. This book, I Had a Tumor, It Wasn't a Rumor, began as the edited script from that presentation. ... We are pleased to provide I Had a Tumor, It Wasn't a Rumor as a PDF file on this website, making it accessible to more families in need."
http://www.rossromenesko.org/making.html
(This book can be downloaded for free as a PDF file at http://www.rossromenesko.org/making.html).

Ross and his family had a story to tell. They found healing in creating a resource that could help other kids deal with a cancer diagnosis -- while empowering them with some age-appropriate tools and tips from someone who had been there.

"Alex's Lemonade Stand Foundation (a registered 501c3 public charity) is a unique foundation that evolved from a young cancer patient's front yard lemonade stand to a nationwide fundraising movement to find a cure for childhood cancer. Since Alexandra 'Alex' Scott (1996-2004) set up her front yard stand at the age of four, more than $10 million has been raised towards fulfilling her dream of finding a cure for all children with cancer."
http://www.alexslemonade.org/

Alex did not survive the cancer, but her desire to help other kids who are fighting the disease has lived on through her family.

"Ten days after Britney Ann Bostley was born on March 13, 1999, she underwent invasive surgery to repair her congenital heart defect. Today, she inspires others to fight heart disease and stroke. In fact, because of heart research and gifted surgeons, Britney will get a chance to fulfill her own dreams one day. She may even follow in the footsteps of her mother, two-time Olympic gold medalist Cathy Turner. Cathy Turner and her husband Tim Bostley know that without funding for critical research, their daughter may not be alive today. That's why they organized 'Team Britney' in March 2000. Armed with stickers, buttons, banners, signs and T-shirts, they brought family and friends together to raise money for the American Heart Walk."
American Heart Association

In March of 2000, Britney was too young to understand "that without funding for critical research, [she] may not be alive today." In this case, it was her parents who turned a congenital heart defect into a way to help others and bring hope to those who might some day have to face a similar situation.

Thousands of children (and teens) receive potentially life-threatening diagnoses each year. With these diagnoses come patients, families, friends, and classmates who are deeply affected.

Type 1 diabetes, cancer, and congenital heart defects are examples of potentially life-threatening childhood conditions that, currently, no one knows how to prevent. This can leave those affected feeling helpless and out of control.

Questions of the Week:
What can patients and families do to help them find control, help themselves, help others, and make the best out of a difficult situation? How might those affected by the same condition handle it differently? As the friend or classmate of one who is affected, what can you do? Whether you have been personally affected by a serious illness, know someone who has, or just want to help, are there ways you can help those you don't even know?

Please email me with any ideas or suggestions.
Note: Due to increasing amounts of SPAM sent to this account, please include "QOW" in the subject line when sending me email.

I look forward to reading what you have to say.

Cindy
aehealth@yahoo.com
Health Community Coordinator
Access Excellence @ the National Health Museum
http://www.accessexcellence.org

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