Boy Born With Crooked Big Toe Now Stuck In Standing Position After Muscles Turn To Solid Bone

Dec 01, 2019 by apost team

A new mother being told her baby boy has a crooked toe wouldn't be too concerned; it's just a crooked toe. Everyone has something weird or not quite right about their body. A crooked toe cannot possibly be important.

Unless it is the first sign of a very rare condition called fibrodysplasia ossificans progressiva, or FOP for short. As detailed here at the International Association, the condition results in a baby's muscles gradually turning into solid bone.

Collette McGuire's son Cameron was born with the signature crooked toe according to Inside Edition. Gradually, over time, his muscles have all turned to bone. At age 27, he is frozen in a standing position, a living statue. He can't lie down or sit, and he can't speak. He also has difficulty eating.

apost.com

Sometimes referred to as "stone man syndrome", FOP has only been reported to affect 800 cases worldwide. It is caused by mutations in the ACVR1 gene. ACVR1 is involved in the replacement of cartilage by bone that normally occurs as a child grows and develops. However, in FOP, it's not just the cartilage around the growth plates that turns into bone, all of the muscles do so as well.

The process usually becomes noticeable in early childhood. It affects the neck and shoulders and then gradually moves down the body towards the feet. In addition, any injury or trauma triggers rapid development of bone in the injured area; what would be a simple bruise or cut in a healthy child turns into a lump of spreading bone in children with FOP. The prognosis of the condition is poor. Most affected individuals become unable to move or care for themselves in their 20s and none have lived beyond age 40. Eventually they become unable to eat or breath as their bodies solidify. There is currently no treatment.

The IFOPA foundation provides support and educational materials to affected individuals and their families. It also funds research into a cure for this devastating condition. Do you know someone looking for a charity to donate to this holiday season? Consider telling them about this story.