Ben and Jake Connolly Trust
Subtitle
Jake
Thanks for visiting our boys' page!
Ben and his late brother Jake, are two brothers who were born with a rare syndrome that only affects boys called Allan Herndon Dudley Syndrome. Jake sadly passed away in January, 2016.
They are missing the cell that allows the thyroid hormone through to their brain which causes a lack of myelin around the wiring of their brain this slows down or causes mixed messages from the brain which causes them severe developmental delay, low muscle tone - they are floppy like a rag doll and are unable to sit unaided or support their own head, they are both tube fed. Jake had epilepsy and Ben has severe epilepsy. They will never walk or talk but love interaction.
Despite this, Ben is a happy, smiley boy just like little Jake. Ben continues to love interaction and music!