H.I Syndrome Foundation was founded with the goal of shedding light on rare medical conditions that often go unnoticed or misunderstood. We believe that by raising awareness, we can foster understanding, empathy, and support for individuals and families affected by these conditions
Before embarking on her career as an Author Tiffany joined the medical field after her daughter was diagnosed with Hypomelanosis of ITO. Tiffany devoted 13 years researching seizures to make sure her daughter stayed current and up to date with the latest medication. When not keeping busy with her foundation or working on her next book, you can find her in the kitchen making Torri’s Birthday Cake Ice Cream. This ice cream is near and dear to Tiffany’s heart. It is made with a vanilla base custard and confetti cake with purple buttercream frosting. The purple represents not only epilepsy awareness but also shares the colors for the hi syndrome awareness as well.
When Torri was diagnosed with H.I. Syndrome her parents made it their mission to give her the best life and chance possible. Torri loved to listen to music and playing in the water. Torri was nonverbal but if it came with music, she was all over it.
Torri had just about every type of seizure from absence seizure, atonic, myoclonic, and so on. It was impossible to control these seizures with just medication so her parents also added the VNS device to their therapy and adopted the ketogenic diet for epilepsy. Sadly, all were ineffective, and Torri passed away on Oct 1st, 2015.
Torri never complained about her mother’s cooking which gave her mother the confidence she needed to create a one-of-a-kind ice cream just for her daughter called Torri’s Birthday Cake Ice Cream. That confidence is the driving force that also birthed the H.I. Syndrome Foundation.
Torri would be so proud of her mother for helping families with financial support, mental health support, and the reassurance that they do not have to travel this journey alone.
H.I. Syndrome Foundation
DISCLOSURE: A copy of the current financial statements of the HI Syndrome Foundation is available by writing 527 Garner Avenue, Waldorf, MD, 20602 PHONE: 240-640-9969. Documents and information submitted under the Maryland Solicitations Act are also available, for the cost of postage and copies, from the Secretary of State, State House, Annapolis MD
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