Disabling Rare Disease Changes Tissue and Muscle To Bone

Josh Scoble on first glance seems an ordinary boy who enjoys all the activities a young boy of his age would do.However,this 3year-old kid suffers a rare disabling genetic disease that can change the muscle and flesh on his body to bone.

His parents do not restrict him from doing all the activities boys his age enjoy yet they dread him getting bruised or hurt as this can lead to his muscle and skin changing to immovable bones that will eventually restrict him from moving about freely.In other words his body can become frozen with bone and would make him completely immobile.

This disease is called fibrodysplasia ossificans progressiva or FOP.There are so far 700 known world wide of this rare,and life threatening illness.

His parents Stacey and Dave Scoble were with their son on NBC tv and they related how they were suspicious at the child's birth as his big toes were deformed deformed toes and it seemed he had hearing problem.When he was 3 weeks old he developed fever and the doctor suspected there might be sepsis so he drew out fluid from his spine.This was the worst thing he could have done as a lump appeared on his back which they tried to perform a biopsy which was the worst thing they did as that led to the formation of bone and the tissue became rigid.His back became completely stiff and he could not lift his arms.Recently, he finds difficulty in moving his neck.

They did a bingo fundraiser and raised 100,000$ for research that is being carried out at Pennsylvania University.

It is hoped that by the efforts of Dr.Kaplan Fredricks (who heads the program), prove fruitful and a cure is found for this threatening disease in the near future.