Skip to main content

Lehigh Valley's own, three year old Joshua Scoble, fights extremely rare genetic disease

Joshua Scoble is only three years old but he's fighting a battle he didn't choose to enlist in. He has Fibrodysplasia Ossificans Progressiva. "'It is the cruelest disease that I've encountered,' said Dr. Frederick Kaplan, an expert on FOP and newly elected member of the Institute of Medicine of the National Academy of Sciences. 'It imprisons people. It's like a molecular terrorist attack'." As quoted from International Fibrodysplasia Ossificans Progressiva Association (learn more).  FOP is a disease where the soft tissue turns to bone.  There is only a 1 in 2 million possibility of having FOB.

Joshua's parents are very loving and supportive.  They are doing all they can to allow Joshua to lead a normal life which is very difficult knowing that typical, childhood activities will contribute to the bone growth.  You can help them in their fight to buy time for Joshua by going to their website BingoForACure and joining them in their fund raisers and activities.  The next event, as posted on their website, will be a gathering at Friendly's:

Date: Thursday November 12th
Time: 4:00pm till 9:00pm
Location: 460 South Cedar Crest Blvd. Allentown PA 18103 (Dorneyville)
Proceeds: 10% - 20% on all in house, carryout and ice cream will be given to the IFOPA in honor of Joshua

Joshua was featured on the TODAY Show last week.  On October 15th, Mike Celizic of TODAYshow.com quoted Dr. Nancy Synderman, NBC's chief medical editor as saying, “Every little bump, every surgery leads to this change in the tissue where it really becomes bone,”  For a touching video from the TODAY show click here.

Symptoms of FOP:  The earliest warning signs are malformed big toes. The big toe is smaller than the other toes and usually bent inward.  FOP starts in utero although the soft tissue doesn't usually start turning to bone until after birth; most children being diagnosed before age 10. Symptoms usually present first in the shoulders and upper back where inflammation flares and swelling begins.  The inflammation can be painful but is not always associated with pain. The rate of new bone growth is unpredictable as some people's symptoms progress rapidly and others more slowly.  The neck, shoulders, and upper back, however, are usually the first areas affected and it then moves to the hips and knees as the disease becomes more progressed, usually in early teen and adult years.  For more information visit Fibrodysplasia Ossificans Progressiva's website.

More from the FOP website:  "Demographics of FOP:

  • Genetic disease affecting 1 in 2 million people
  • No ethnic, racial, or religious patterns
  • 700 confirmed cases across the globe
  • 285 known cases in the United States"

For more detailed facts about FOP visit the website.

For more info: International Fibrodysplasia Ossificans Progressiva Association

Comments