Team Phoenix Fury visits Dr. Peter Belafsky in January 2013 – From left to right: Hanna, Vishal, Dr. Belafsky, Aiden, Jeremy, Amrita, Akshay, and Nicole.
This petition was closed on July 20, 2013. Over 2,500 people responded. The NFOSD shared the results of this petition with a group of senior and seasoned NIH members from five different NIH Institutes in mid-May 2013. It was a very productive exchange of ideas and perspectives. We wish to thank everyone that responded and for those reading this message for your support and interest.
[Editors note. The NFOSD published Jack Eadon’s story in mid-November. He has a website, www.jacksgettingback.com where he has chronicled his medical and personal journey. On January 14, 2013 he began an intensive two week “Boot Camp” to try and regain his swallowing ability. As President of the NFOSD, I communicate with a lot of people suffering from dysphagia. One of the pleasures of this position is meeting other people, like Jack, who are determined and committed to do what they need to succeed. The NFOSD wishes Jack the best and hopes this intensive approach to therapy opens a new avenue in our arsenal for fighting dysphagia.]
[NFOSD note – Jaime shares the 5 most helpful tips for families experiencing a similar experience at the bottom of this article.]
The NFOSD shared my son’s story with you recently; I thought it might be helpful to others if I shared my story. My beautiful, energetic, happy, 2 year old baby boy, the joy of our life, has severe dysphagia. I know there are lots of other mothers out there just like me. We are not alone! Raising the awareness of swallowing disorders is a small step that can help millions.
You’re worried about your child’s feeding and swallowing skills. Maybe your child is still taking the bottle when her peers are drinking from a cup. Perhaps your child is choking and gagging when eating certain foods. Or maybe your child, who used to take the bottle with no problems, screams every time he sees the bottle and refuses to drink. Or maybe your child has taken the term “picky eater” to new heights; picky doesn’t begin to describe the limited list of foods your child will eat. Perhaps you’ve had to stop taking your child out to eat at restaurants because his tantrums during meal times draw too much attention. Or your child tries new foods, but spits them out and refuses to swallow.