Finding the Facebook support group really helped bring my son's disease into perspective. All the specialists we had been seeing couldn't provide reasonable expectations of the prognosis.
Getting my son into the Shriner's hospital in St. Louis has really helped. He has an upper and lower extremity specialist that have both dealt with Ollier's in the past.
The Facebook support groups, I was a rut, feeling helpless and finding the Facebook groups changed my outlook completely, helped me to continue being strong for James
Time has made all the difference. My son was diagnosed at 3 months old. I was afraid he wouldn't be able to walk, but he's nearly 2 and runs around like any other toddler.