Henry's Story

Current Update

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Henry struggles the most with frequent tonic clonic seizures, every 3 days or sooner, and he stops breathing with each. 

We live in fear every day not knowing what symptoms might hit. We fear he will have a tonic clonic seizure we won’t be able to stop, or that his paralysis will be so severe and prolonged that it will lead to temporary or permanent regression. We fear his apneas might never be fully controlled on any anti-epileptic medicine and we will always have to support him with oxygen weekly. We never take a good moment, hour, or day for granted and try to live life to the fullest during the days in between symptoms.

Henry loves to read books, listen to music & dance, and play with his beloved lion. Most of all, Henry loves to practice walking more steps each day as he learned to walk in late 2023.​

​In addition to his frequent routine appointments and unexpected hospital visits, Henry has 10 therapies a week: PT, OT, SLP, and music and works hard for every milestone. Currently, Henry has a global delay and works hard to coordinate movements including with his hands like holding utensils or markers as well as gross motor skills. Henry has words and understands everything we say, though the production of new sounds and words continues to require lots of effort. Henry continues to learn and progress in all areas thanks to his dedicated therapists and his own determination.​

Henry loves reading or listening to “I am Yoga” or “Be Who You Are” and cheering for himself with us when he has done something spectacular, which is often. Henry tends to make an impact on everyone he meets, surprising and inspiring them with his joyful, happy, resilient attitude and in the progress he continues to make after experiencing such severe symptoms.