Name :     Robert (Bobby) Helverson  (Parentsw - Julie and Bob Helverson)

E-mail :

Child:  11 years old     

Location:   Havertown, PA

Area(s) affected:    Left Metatarsal and Tibia

Personal History:

Originally diagnosed with Melorheostosis in 2013 at age 9.  In 2013 we took Bobby to a Podiatrist because his left leg looked thicker than his right leg and his left foot was 2 sizes smaller than right foot.  X-rays were taken at that time and the Podiatrist referred us to the Children's Hospital of Philadelphia.   We visited the Children's Hospital of Philadelphia and they diagnosed Bobby with Melorheostosis.  They did LEMD3 blood testing and the results were Negative.  We then visited Nemours DuPont Hospital for a second opinion.  We meet with Dr. Michael Bober (Genetics) and Dr. MacKenzie (Ortho).  They confirmed the diagnosis there as well.  Shortly after we first visited DuPont, Dr. Whyte was schedule to visit DuPont.  During his visit at the hospital he had a chance to review the x-rays and also confirmed the diagnosis.  We continue to see Dr. Bober (Genetics) and Dr. Reid-Nichols (Ortho) for treatment at Nemours DuPont Children's Hospital.  Bobby currently takes a vitamin supplement (Calcium and Vitamin D).  He is often fatigued.  He never complains of foot or leg pain but he often complains of back pain.  Bobby is currently going to Physical Therapy to help strengthen his core and increase his balance.  He currently has a slight discrepancy in the length of his legs.

Thank you!

Julie Helverson   



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