Born Different: This Little Boy Lived With The Butterfly Skin Disease.
His skin is super fragile like a butterfly's wing, that's why all called it is a butterfly the heat. It's the worst thing he is never heard of anything that can get like stuck to his ladybug and turn his skin up. He really likes it when people tell him that they are proud of him.
He was born with epidermolysis bullosa recessive tropical. They actually gave Marky to the age of 13 and he is now 19. He will be 20 this year so he surprised everybody the type that Marky has is recessive dystrophic and so both the parents have to carry the gene for the child to receive the disease.
It affects anywhere that he has skin mucous membranes so it also goes internally it goes in his eyes his mouth is his internal organs and he also gets blisters on the inside of his mouth as well which makes it hard for him to eat. He is never been able to walk and it is a progressive disease so the older he gets the worse disease.
The disease will become infection-free for 10 years the longest he was ever hospitalized was a month and a half for an infection. All are trying best to talk through it but as that doesn't really work until they are over it and it all of the gauzes is off and he knows that nothing else is stuck.
It is just really extremely painful, it's like that every day or is it different and it's every day because it got like thoughts and he is gonna get stuck in his scanner so they did a ranking on the pain scale of these type of these of all the top terminal disease in the world.
This was ranked number one even above bone cancer and it's called the worst disease. We have never heard of every morning his mom changes her businesses and gets him up and then she usually has most of a good day. He just likes bringing joy to people, he is just a joyous kid dog. This dog really special for him and whenever he is in a pain or not feeling good they will go to his room.
They are emotional support dogs they help him to disrupt from his band exchange and everything he loves playing with both dogs. Both dogs help him to take his mind off of all his pain and everything and make him happy every time.