Benjamin was born 10 weeks premature weighing only 3lbs 3oz. He could be covered with a facecloth,he was that small. As Benjamin got older we realised everything wasn’t as it should be. Benjamin had every test going but no definitive diagnosis could be given. Recently we have discovered Benjamin had a very rare genetic disorder shared by only a handful of people worldwide. Benjamins genetic disorder has left him being unable to walk or talk or coordinate his swallowing. Not being able to coordinate his swallowing means Benjamin can’t eat or drink and has to be peg fed. All of his medication is given this way too. Benjamin also has a rare form of epilepsy is partially blind and has major scoliosis of his spine( which at some point in the future he is going to need an operation to try and correct this.
At the moment Benjamin’s bedroom is upstairs and he has to be carried to bed every night and carried down every morning. Benjamin is a big boy now and this is becoming increasingly more difficult for us to manage. We need to build an extension on or house downstairs so that Benjamin can be safe. He so deserves a lovely bedroom downstairs that is suitable to his needs. Despite all of his problems Benjamin is one of the happiest boys you could ever meet. He loves cuddles and holding hands. He loves super simple songs and he is the world’s number one Peppa Pig fan. He is our hero. Please help if you can,so Benjamin can be safe. Thank you.