Name : Jonathan (mother, Angela Pendergraft)

Child:  9 years old

City, State:  Tulsa, Oklahoma

Areas of involvement: Right foot, leg and pelvis; mandible

E-mail : kevpenergraft@aol.com

Personal History:

My son Jonathan, has melorheostosis.  On a trip to the dentist it was noted that he had a jaw tumor.  An oral surgeon said it was benign but quite unusual.  I took Jonathan to a podiatrist because his toes were becoming curved.  I thought it was hammer toes.  The podiatrist referred me to an orthopedic doctor and that is when he was diagnosed with melorheostosis.   I am frustrated because the doctors here do not know about it and have no information or support to offer.  My son’s right foot is two sizes smaller than the left.   I contacted Nike directly (headquarters in OR) and they agreed to sell me two different sized shoes and only charge me for one pair, for which I am thankful.   I am unsettled about the thoughts of my son’s future.  Working in the medical field myself for many years I have seen a lot of horrible things and a lot of pain with different types of diseases.  I know all I can do is wait and see how he will progress.  He plays all sports and is very active and quite talented in that area.  I realize now that he will not be able to play college ball or anything like that, but I will continue to let him play as long as he can.  Let him enjoy it.  If anyone has any information for me please send it.  I thank you sincerely. Jon's mom,

Angela