The Ben and Jake Connolly Trust have been chosen as one of the Mykidstime Charities for 2016. Ben & his late brother Jake are the only sufferers of the Allan Herndon Dudley Syndrome in Ireland. The trust has been set up to raise funds to build a house for Ben, which will be passed back to the community in time, for other families with children with special needs.
Ben (and his little brother Jake Connolly who passed away on January 22nd, 2016) were two brothers who were born with a rare syndrome that only affects boys called Allan Herndon Dudley Syndrome. Jake’s little heart gave up after many brave battles. He was only 2 years old.
What is Allan Herndon Dudley Syndrome?
Suffers of Allan Herndon Dudley Syndrome lack 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 sufferers severe developmental delay and low muscle tone. For example, they are floppy like a rag doll & are unable to sit unaided or support their own head.
What Does the Mean for Ben?
Ben is tube fed and has severe epilepsy. He will never walk or talk but loves interaction. However, the prognosis is not good. Currently, there is no cure. Life expectancy is short.
Despite this, their smiles were infectious! Ben continues to adore interaction and music! Ben is so lovable as was his little brother Jake. Jake particularly loved Ed Sheeran & having his feet rubbed.
What is the Ben and Jake Connolly Trust?
The vision is to build a state-of-the-art home for the duration of Ben’s life.
A legal charitable Trust has been created in Ben and Jake’s name to raise funds to build a house fully adaptable to Ben’s current and future medical needs.
Right now their home is cramped with equipment, medication & various other supplies.
The uncomfortable and sad truth is that Ben will join his brother Jake sooner rather than later. It’s a difficult reality to put across but it needs to be said.
When this sad time comes, the house will then pass back into the community for the use of another local family with special needs of any kind.
How Can You Help?
Right now we have only half the funds necessary. Despite valiant & never-ending fundraising activities by the people of Mountmellick, Portarlington & surrounding areas, we are a little town in a little county. We need MAJOR help. As of February 1st, 2016, we need to raise about €250,000.
The site has been kindly donated, the planning permission is secured. We will soon turn the sod on this happy home. And you can be involved in our journey by helping with fundraising.