Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Friday, October 1, 2010

FPIES United Family Fund

A fund has been put together through Children's Hospital of Philadelphia for FPIES research and education. CHOP is the leading FPIES Hospital in the US at this point. A fellow FPIES family was approached to help and through their connections, the FPIES UNITED FAMILY FUND was started.

This is going to be huge, but a lot of funds need to be raised before this can even begin. Moms all over the country have begun fundraising to get these funds going. There is a really neat, informative brochure in the works to raise awareness and families are bringing this information to their pediatricians, allergists and GI's to gain all the awareness possible so that hopefully, down the road, no family will have to go through what we've had to endure and that the professionals they trust the most with their childs health will be able to help them.

We were asked for our ideas in collaborating the website. We supplied pictures of our babies for the "faces of FPIES" and also were asked to write about what FPIES means to us, to have it displayed on the site. There is also a guestbook which many mom's have listed their personal blogs to help gain a little more awareness of each of our individual stories.

When you have an extra moment, please check out the FPIES United Family Fund website. If you are able, please make a donation to help Kara and all of the other families struggling with FPIES.

For more information on the fund, you can also visit our Facebook Site or just search "fpies united family fund.

When I was asked what FPIES means to me, one word came to mind. I dwell on this one word daily. I will be posting how significant discipline is in our lives in the near futre. I think that one word sums it all up for us. Lately it seems that that's all life is all about.

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