Posted October 6, 2011 - 1:25pm by Tracy
How many foods can Ginny eat now?
When Genevieve “Ginny” Toussaint of Ravenswood turned 1 last November, she didn’t get an elaborate dinner or a big piece of birthday cake. Thanks to a rare and severe food intolerance called FPIES, her special treat for the day was a banana quinoa muffin.
This year, when Ginny turns 2, things will be a little different: She will enjoy a salmon dinner, grilled asparagus, blueberries and her favorite — Haagen Dazs five-chocolate ice cream for dessert.
This dramatic change in Ginny’s diet is the result of a long and difficult road for her family, but one that seems to be smoothing out a bit.
This summer, Well Community ran an article which described the nature of Ginny’s condition, her mom’s quest for answers and their family doctor’s efforts to find the diagnosis.
This story not only captured the attention of Well Community readers, but that of the thousands who tuned in to WGN News’ report about Ginny.
At the time of the report, when Ginny was 18 months, only 24 foods had made it on to her “safe list,” and only after each had passed weeks of painstaking at-home trials.
Today, three months later, Well Community is happy to report that Ginny is happy, healthy, talking up a storm and up to 29 safe foods, including corn and several kinds of fish.
“Recently the food trials have gone well, and we are really happy,” said Jamie Toussaint, Ginny’s mother. “Being able to eat corn and get protein from fish opens a lot of doors for us and for Ginny’s overall nutrition.”
And that is not the only bit of good news for the Ravenswood family.
In August, the Toussaints and seven other families touched by FPIES banded together to launch the FPIES Foundation, a nationwide, non-profit organization and website designed to provide support, education and advocacy to families and the medical community.
“The bottom line for us is to create a source of information for any family that has experienced FPIES,” Jamie said. “For most diagnoses, like cancer, there are websites, brochures and specialists dedicated to the condition that families can seek out for information and help. That is not the case for FPIES. No information is out there … so we started this organization to serve that purpose.”
And by all accounts they are already succeeding.
Since the launch of the organization, the founding members have been inundated with stories of families all over the world who are struggling to identify, diagnose and treat this condition, and from physicians and other health care professionals who want to help.
“The response has already been incredible,” Jamie said. “With the encouragement, gratitude and support from so many families, and the immediate buy-in and advice from several doctors, we are off to a great start.”
In the future, the organization hopes to rally the support of more physicians and eventually facilitate FPIES research. In the meantime, they will continue to build their presence online and in the medical community.
“We hope that no family struggles alone again, but can find one another, information and knowledgeable medical professionals using our resources,” she wrote in a recent blog entry. “We hope to educate medical professionals so they, in turn, are able to help more families, identify FPIES earlier and avoid additional complications.”
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