Name : Lorenzo by Trisha Galindo (mother)
E-mail : Trisha.Soliz@cacost.org
Child: 14 years old
Location: Kingsville, TX
Area(s) affected: Left Femur / Right Tibia
Personal History:
Lorenzo was first diagnosed in October of 2015 when he was 13. He had a football injury that we went in to have checked out. He hurt his hip and leg during a game. We took him in the next day due to pain and barely being able to walk. Well the x-rays did not show any fractures of breaks, what it did show was Melorheostosis. At first they would not tell me what it was, just told me to follow up with my pediatrician.
A couple of days later we went to his dr., they ordered more x-rays still without telling us what it was. After all the x-rays, I'm assuming to make sure that was what they thought it was, they told us the diagnosis. They referred us to ortho doctors in our area but no one would see him due to never seeing a case before. We were then referred to Texas Children's Hospital in Houston, where again no luck with any doctors having seen a case. They did try to help with pain management and suggestions, but nothing has helped him.
Lorenzo's pain has continued on a daily basis, increasing when he is active. He is into all sports and still continues to participate in them. He has shown so much strength during this time and dealing with it all. He is a true inspiration to me.
We are now getting ready for a trip to St. Louis, Mo to see Dr. Michael Whyte / Metabolic Bone Disease. We are hoping he can give us a better understanding of Melorheostosis and what we can do to help Lorenzo in the future. As of right now we have yet to have a physician that can help. We will be there for a week, praying that a lot of good will come out of this trip.
To everyone suffering from this condition, you are all stronger than you can ever imagine. Hopefully one day we can find a treatment/cure for this.