Matters of Faith has been out for two weeks now, long enough that I am beginning to steadily get the questions I knew would come once readers had time to finish the book. Some are the usual questions ("Where do you get your ideas?" "Is this set in Everglades City/Chokoloskee/Goodland etc.?" And my personal favorite: "Have you been spying on my family?"), but one that I'm getting seems to want an answer with a little more thought and some helpful information.

The e-mail usually goes something like this: "Do you have food allergies? Or do your children? Because it seems as though you must have personal experience with it." Most often, the writer goes on to tell me either about their food allergies or the difficulties they have dealing with educating people about their children's allergies. I am, of course, so honored to get e-mails like this, because it means that I managed to get something right, something important to these people's lives, without having any firsthand experience with it.

Do you know how terrifying that is?

So, to answer those questions, here's the story, and perhaps some help for families just beginning to deal with food allergies. I've known about food allergies for years in a surface way, the way most people do, because of a brief story in the news, or a conversation with an acquaintance. But it wasn't until 2005 that I, and millions of other people, became aware of just how serious these allergies could be when a Canadian teenager was reported to have died after kissing her boyfriend, who'd eaten peanut butter on toast hours earlier.

Christina Desforges was fifteen years old, such an in-between, important age, an age that immediately made me ache for all of the things I knew she was going through, trying to grow up, trying to be independent. And it made me ache for her parents, too, who must have struggled with how much independence to allow her, knowing that they had to let her live her life, let her make her own choices, and let her be around people who might not understand exactly how serious their daughter's medical issues were.

It was her parents I hurt the most for, and, like many writers, I tried to place myself in their shoes, tried to understand not just her fifteenth year, but all the years before it, keeping her safe, only to have it fall apart. My heart broke for them.

Months later the coroner announced that her death had not been the result of her peanut allergy, but had been due to asthma-linked respiratory failure. No consolation to her grieving family, of course. And my own research had already begun, because I knew I had to write about how families coped with sending their children out into the world where such small things could be so very dangerous.

My research consisted of the usual, medical books from the library, speaking with an allergist, and endless hours searching for pertinent information online. I was relieved, for me as a researcher, sure, but more for parents, to find several wonderful online resources.

The first one I found was Kids With Food Allergies, or KFA. KFA became a valuable resource for me for the same reasons it has become a valuable resource for over 12,000 families dealing with raising children with food allergies. One thing that sets KFA apart is the very active discussion forum, where parents can connect directly with other parents about everything from 911 Scripts, to recipes, to dealing with how to educate extended family and the school system. Below is a brief history of the non-profit organization.

I hope you'll read through it and visit the website, explore the forums, and consider supporting the organization. The perspective I gained there was invaluable, and I thank all the families and administrators for their dedication to making the world a little safer, so that the tragedy that befell the Desforges family doesn't happen again.

In the next few days, I'll tell you about another organization that was incredibly helpful in my research.

KFA Enters New Era as Rise in Food Allergies Fuels Unprecedented Growth

When a handful of parents started an e-mail list in the late 1990s to help each other cope with their children’s food allergies, they had no idea it would become a full-fledged support organization with thousands of members nearly 10 years later. Kids With Food Allergies, Inc. (KFA) actually began as a listserv called Parents of Food Allergic Kids, or POFAK™, in September 1998.

By 2000, membership reached more than 1,000. Based on this growth, it was obvious that an organized, professionally-led effort was necessary to provide trustworthy food allergy information, food and cooking help, and peer support to families, many of whom are isolated and wanting to connect with other families like them. In 2005, KFA was launched as a tax-exempt nonprofit organization.

Today, KFA is one of the largest nonprofit organizations serving parents of food-allergic kids, offering a powerhouse of support resources to its more than 12,000 members. POFAK™ still remains as the peer support community for parents to communicate and educate, as well as provide a “World of Support” to those learning to adapt to a food allergy lifestyle.

This includes Kristin, a member since 2006, who remembers when she first found KFA: “My [husband] was on a two-week business trip and I was up with my baby, Molly, at 2 a.m., sobbing at my computer because I was at my wit’s end about how to manage food allergic living. I didn’t know where to turn. I found KFA, registered as an associate member, read some posts in the main forum, and immediately knew I belonged here. I became a Family Member right away,” she states.

POFAK has grown from a single large discussion list to a vibrant online community with 23 smaller support groups based on member needs. These range from forums for parents of babies, toddlers and preschoolers, and moms nursing food allergic children, to three forums dedicated to food and cooking help. The forums are only a small part of KFA’s current offerings, which also include an expanding education program, food and cooking assistance program, and outreach efforts. Feeding the food allergic child can be an overwhelming challenge since many manufactured foods are not safe for many. KFA’s Food and Cooking program provides a growing array of helpful resources. The Safe Eats database, which currently houses more than 900 recipes, is a popular KFA offering that makes cooking easier.

Members share their favorite recipes by adding them to the database, which lets users search for recipes “free of” certain allergens or by category. Karen, a long-time member, has gained a lot from the Safe Eats database. “The most immediate help was with cooking when [my child] was allergic to eggs, milk, soy, and nuts. The exchange of recipes and ideas was so helpful,” she says. Resources are also available to help parents read labels, grocery shop, make recipe substitutions and more. The popularity of the recipe database has even sparked “KFA Iron Chef” competitions in which members inspire others by showing off their ability to cook delicious, creative, and safe foods using uncommon ingredients and substitutions.

Educating families and their communities is another service of KFA. KFA produces a number of articles and twice-monthly newsletters on topics including nutrition, school planning, label reading, travel, new allergy-friendly foods for kids, handling special occasions, and more. KFA members can use these publications to not only learn more themselves, but also to educate their schools, doctors, and communities about safely caring for children with food allergies.

KFA also offers something for the kids. The KFA’s Online Store carries children’s books and “Please Don’t Feed Me” shirts and bibs, and a holiday card artwork contest for kids was a popular addition last year. With just a small staff, KFA relies heavily on the talents and contributions of a large group of volunteers and a skilled Medical Advisory Team, which includes eight physicians and health professionals.

“KFA is a ‘one-stop shop’ for all my needs as a parent of a child with food allergies,” according to Deanna, another member. “I joined KFA in 2007 when my daughter was 18 months old and had a significant allergic reaction to something I had served her for breakfast. While I was able to see an allergist quickly, without the support of the other parents on KFA, I would not have known all the questions to ask and how to feed and shop for my child.”

As food allergies continue to rise, more and more parents are turning to KFA for unmatched peer support and food allergy information. And KFA plans to keep meeting that need. KFA President Lynda Mitchell states, “Until there is a cure for food allergies, we have much work to do in terms of creating more programs to help meet the day-to-day support needs of parents and caregivers managing this often life-threatening condition, and in collaborating with other non-profits and businesses to work together on future educational, advocacy, and research initiatives.”

In the meantime, current members are more than happy with the support they receive from KFA. “Over the years, KFA has become a lifeline of people who ‘get it;’ people who have been there and done that time and time again,” says member, Maxwell’s Mom, who found KFA through an Internet search. She says, “I looked for ways to relieve my son’s eczema and learn about his food allergies. It’s still the first place I go when I need information and support from families like mine who deal with food allergies. I love KFA!”

--Tanya Bumgardner is a freelance writer and parent of a food allergic child.