Our son Dallas is just 20 months old and has been diagnosed with FOP which stands for Fibrodisplaysia Ossifica Progressive.
Fibrodysplasia Ossificans Progressiva or FOP is an ultra-rare genetic disorder that causes bone to form where it should not – outside of the skeleton and in the soft and connective tissues such as in the muscles, tendons and ligaments.
The process of bone forming outside of the skeleton is called Heterotopic Ossification or HO. Over time HO leads to ribbons, sheets and plates of extra bone forming in places throughout the body where bone should not be.
Dallas being under 2 years old does have a lot of hope with future treatments coming available in the near and distant future. Our hope is that he does not experience any life changing episodes before he can begin them. So far he has just experienced several flare-ups and so far his body has won the battle of not adding new bone. With FOP we have to be so careful because any injury or body trauma can lead to a flare-up which of course could be life changing for him. Sometimes they can be spontaneous and begin for no apparent reason. We have already transitioned him into a floor bed since he began standing up in his crib. We also added a large floor playpen we call his apartment to keep him safe in our family room. And since even sickness can lead to trouble we also installed a hand sanitizer which tells the person’s body temperature. We recently had a very small rally party for him which we called it “One In 2 Minion” since FOP odds are actually 1 in 2-2.5 million people.
At this time we are asking for your prayers and support for Baby D as we began to save as much as we can for his treatments and adaptive equipment for him. Also for his trips to Philadelphia to see Dr. Kaplan who is the leader in the USA for FOP care. We appreciate you!