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 this year.
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!
A legal charitable Trust has been created in Ben's and Jake's name to raise funds to build a house fully adaptable to their current and future medical needs. See page The Trust for more information. See Donate page for alternative ways to donate.