Many families have differing goals with treatment! Although little Penn isn't freely eating all of his foods by choice, his family can now enjoy an amazing amount of freedom and flexibility to travel and be safe! We are so happy to hear his update and see fun pictures from this family's travels to Japan!
"We eat at Thai restaurants, Vietnamese restaurants and Chinese restaurants regularly without concern or incident, and we took a family trip to Japan last year where he ate incredibly well and enjoyed every kind of Japanese meal you can imagine. We never worried once. We have never had an issue with his dosing or eating in maintenance — unless he did not observe the rest period. We have learned what works for Penn and our family through this journey and we are grateful to Dr. Jain and his staff and are thrilled that he lives a very normal life in maintenance. "