T* has a rare condition called glycogen storage disease- type 4.
It affects the muscles in his body, the main being his legs, therefore he cannot walk and may never do so. It also affects his ability to chew and swallow so he is fed though a gastrostomy. T* is the most strongest and motivated little boy I have ever met, he tries his best every day to strengthen his muscles by standing up at the furniture or trying to push himself up off the floor. He tries bits of food and is managing to snack throughout the day. His little brother O* is a miracle sent from above, he is T*’s best friend! His little brother is always looking after him, he loves to push him on his push toys and makes sure he’s okay, they are constantly making each other laugh!
#gastrostomy #tubie #feedingtube #glycogenstorage #SEND #Warrior