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Making the Most Out of Living with Diabetes Camryn Adams takes her case to the White House and beyond By Elliott M. Burke

Camryn Adams, of Pelham, kids around with her brother Stratton. PELHAM – Camryn Adams is a force to be reckoned with. When you first meet her, she appears to be just like any other normal, average all American kid. She can hardly sit still and fidgets as she goes through the list of her favorite activities, which include running, biking, swimming, horseback riding and writing. She has a warm, infectious smile and an easy, welcoming nature about her. Camryn is a vibrant and outgoing kid with boundless curiosity and plenty of energy to match it. Yet here is where the similarities begin to diverge. At the age of nine, Camryn has had


to deal with more than she would have expected for a girl her age and in turn has done more than she might have dreamed. Camryn has Type 1 Juvenile Diabetes. She has to monitor her blood sugar level regularly through out the day to make certain that it stays at a safe level and doesn’t jump to a critical, life threatening zone. She wears an insulin pump and has an emergency kit that she needs to take with her everywhere she goes. Camryn has been living with diabetes for the past four years and, despite the intrusion and the inconvenience, it hasn’t slowed her down or dampened her spirit. “I was diagnosed with the disease when I was five, on March 4th, 2006.” Camryn says. “I started getting tired and thirsty all the time, and I was losing weight. Then one day while I was on a play date, I didn’t feel well, so my mom took me to the doctor. They put me in the hospital and I was diagnosed with type 1 diabetes.” Type one diabetes, or Juvenile diabetes, as it is also known, is a widely misunderstood disease to those who don’t live with it. The pancreas in a person with type 1 diabetes stops producing the insulin needed for their body to absorb food, resulting in symptoms such as Camryn’s as well as seizure and even coma. Artificial insulin is required to safely and effectively counter and moderate the disease, usually involving several shots per day. It can strike at any age despite the classification of being “Juvenile”, is life threatening and requires constant monitoring as well as a complete change in your day to day routine. It also doesn’t go away. “The part of the pancreas that produces insulin gets eaten away”, she explained. “No one knows why that happens. I had never heard the word before and when they first said it, I heard only heard the word “die”. But I didn’t die.” Far from it. Camryn’s ability to turn her struggle into an advantage for herself and others is inspiring and remarkable. Since receiving the news of having type 1 diabetes and doing what was necessary to help moderate her blood sugar, she has become an advocate and ambassador for the Juvenile Diabetes Research Foundation Children’s Congress. This past June she joined one hundred and fifty seven other kids and teens with type 1 diabetes who went to Washington D.C. There they attended a congressional hearing on diabetes research and lobbied Senators Edward Kennedy and John Kerry to renew the Federal Special Diabetes Program and push for health care reform. The Special Diabetes Program was awarded $1.59 billion for research studies into type 1 diabetes between 1998 and 2011, and while that figure is impressive, the need for further funding must be secured to ensure that work for a cure continues. While in Washington, meeting other influential supporters like Mary Tyler Moore, Nick Jonas and Sugar Ray Leonard, Camryn also got to meet President Obama, shake his hand and urge him to support research funding for a cure.


“Going to Washington to meet the President and attend the hearing of congress was exciting” she says, “because we I got to meet so many other kids with my same problem. We all get to work together to tell our stories and find a cure!” “We were little envious of her getting to meet the President”, Barbara Weisman Adams, Camryn’s mother, related. “When I heard about it I said “I don’t know anyone who has met the President”, to which Camryn replied “Well, now you have!”. “One day a nine year-old boy named Tommy Solo had an idea”, Camryn wrote in her essay; “His idea was this: grown-ups talk to people about stuff like finding cures, so he thought the children should do that too and tell their own stories! One day Tommy Solo was on the Rosie O'Donnell show to talk about his idea. And that's what started the JDRF Children's Congress.” That in turn inspired Camryn, who wrote and submitted an essay for the 2009 Children’s Congress about her struggle with diabetes and has become one of their key speakers, encouraging and inspiring others to share their stories. Through her support and work for the Juvenile Diabetes Research Foundation, and the dedicated support of her family, she has raised over $30,000 in the last three years through the JDRF “Walk for a Cure”, and is getting ready to participate in the 2009 Walk to Cure Diabetes coming up in September and October. “I was also asked to speak at the walk's kick off luncheon as the Youth Ambassador this year. I like to tell people about type 1 diabetes. It lets people see that I am just a regular kid who has to work a lot harder to stay healthy”, she said. “People are willing to help out if you just ask them nicely. Most people don't even know that doing something small can help a lot if a lot of people do it together. That is something that I learned from having diabetes.” The support of her family and a keen sense of humor help to keep Camryn’s outlook grounded and strong. She excitedly flips through an album she made of her journey as a diabetic and shares pictures. “This shirt I’m wearing was made by my uncle, who is a scientist”, she points out, explaining the joke: “It says “Sweet as Glucose”, with the chemical structure for glucose written out.”, and on another page there is a picture of her with a cat that her parents bought her. “Its name is Eli Lilly, after the drug company.” Humor and support run through the family, which helps strengthen the bond for healing and overcoming adversity. Camryn and Stratton are both have Celiac disease as well and are on a special gluten free diet. The family joined forces together, not just in keeping a gluten free house but also started a baking business aptly called “SillYak” to provide people with safely processed


creative alternatives to gluten goods while educating the public about Celiac and gluten intolerance. “We’re just everyday, ordinary parents”, says Barbara. “We didn’t sign up for this, but she will always have our complete support”. There is plenty in store for Camryn and her family for the future. Camryn likes to write short stories about crazy donkeys, has already written a book, “Super Camryn and Her Mighty Insulin Pump”, which won second prize in the 2007 PBS Young Authors and Illustrators contest, and plans to be a motivational speaker, continuing her work as an ambassador for the JDRF. “I’m not the kind of kid who sits around and waits. I get impatient”, Camryn says. “I have to do my part to take care of my body and to help find a cure for others.” Her mother will be participating in the Juvenile Diabetes Research Foundation Ride to Cure Diabetes on August 29th in Killington, Vermont. Her brother, Stratton, is committed to her care and the cause as well and wants to be a biomedical engineer so he can help find a cure. What is Stratton’s take on diabetes? “It stinks!” Stratton exclaims. No one in the family can argue with that. “We really need the support of everyone to help the Juvenile Diabetes Research Foundation receive funding and find a cure for diabetes”, Camryn adds. “Please come out and show your support”. For more information about the Juvenile Diabetes Research Foundation, including coming events, please go to their website at http://www.jdrf.org


Camryn Adams Article