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Jessie R.

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2 reviews

Review for The FPIES Foundation, Stewartville , MN, USA

Rating: 5 stars  

Fantastic Organization. Helping families with FPIES and beyond!

Role:  Client Served

Review for The FPIES Foundation, Stewartville , MN, USA

Rating: 5 stars  

I first discovered The FPIES Foundation through a google search of my sons symptoms. He was 2 years old, failing to thrive, and was constantly in the hospital and doctors offices. He was very sick, and no one could figure out why. Once I found the Foundations website, and learned about FPIES, I was able to help the doctors find the resources that they needed to learn about FPIES, and help my son. Our journey with FPIES has been long, but I am so grateful for the Foundation every step of the way. In April, my son got very ill from a reaction to his only safe food, a formula, and was hospitalized most of the month. Our doctors were able to connect to The FPIES Foundations Medical Advisory Board, and talk to the front runners in FPIES knowledge and research, so that they would best know how to help my son. I will forever grateful to The FPIES Foundation. All of their hard work in research, education, support, and outreach literally saved my sons life. The support system they have created in this world of rare disease is unprecedented, and makes me feel like I am not fighting a losing battle anymore. The board of directors are amazing, and never stop advocating for FPIES, and helping parents learn how to effectively advocate for their children so that they can receive the help and proper care that they need. Through their tireless efforts, I feel confident that FPIES will be better understood, and better known in the medical community and beyond, and that other children will be able to receive proper medical care down the road, and not have to go through what my son had to go through to receive his diagnosis.

If I had to make changes to this organization, I would...

None. This organization is incredible.

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Role:  General Member of the Public