Happy Bone China Tea May 7, 2020

Happy OI Awareness Week May 2-9, 2020

This year the OI Foundation is celebrating its 50th Anniversary!!! The two girls on the cover of this invitation are my co-chair of the FL OI Support group's granddaughters both of whom have OI. It is hard to believe that when I was born over 50 years ago there was no OI Foundation, barely any doctor ever heard of it let alone how to treat patients and there was no internet or support groups. Now 50 years later thanks to a letter Gemma Geisman published in Red Book magazine about her son with OI the OI Foundation has grown from three moms who started the OI Foundation around their kitchen table to an office of 12 people and 14 board members, and a medical advisory council made up of 20 doctors. The OI Foundation offers National and Regional Conferences, support groups, provides resources for doctors and healthcare providers. Although there is still no cure for OI it is amazing how far we have come in research, support, education and technology and yet we still have a long way to go.

As many of you know but some of you receiving this letter this year don’t know last year was a very rough year medically for me. You may recall in Dec 2019 Dr. Cereijo removed an 18-year-old rod from my left femur because it was migrating out and causing numbness down my leg and cutting off blood circulation. The recovery from that surgery took me four months but it was an intense four months building up the muscles and getting back to work. Well in Sept I was transferring out of my wheelchair to my driver’s seat of my van and I fractured the left femur completely in two pieces. I was in Lee Memorial hospital / rehab for 10 weeks but I am incredibly thankful for the care I received from Dr. Cereijo and his team. Dr. Cereijo was amazing and took a new idea which he thought of and inserted a fibula rod in my left femur. Something which has never been done before. He literally built plates during the surgery from scratch and screws to attach the rod to in my femur so this rod won’t migrate out. Even though I ended up with an infection which luckily for me didn’t go to the bone or femur it did require me to have to two more additional surgeries and that is why my stay was so extensive. Dr. Cereijo and his team were on the infection right away and their dedication to my care I couldn’t have asked for a better experience. I can honestly say in 4 months the femur was completely healed which for an adult with OI to be healed in four months is unheard of. I remember as a child growing up the treatment method was bucks traction and being flat on my back in bed for 18 weeks and then six months rehab. Times sure have changed in 50 years and I am incredibly lucky.

Dr. Cereijo unfortunately has left Lee Memorial hospital this spring to be a trauma orthopedic doctor at Cleveland Clinic in Cleveland, OH. He had done his fellowship at Cleveland Clinic and they offered him an opportunity he couldn’t refuse. Although this is sad for me because I have to go find another orthopedic doctor the OI Foundation is lucky as he is going to be able to treat other OIers in Ohio and wants to get more involved in the OI Foundation. With his expertise and creativeness this will be something many will benefit from.

Now that the coronavirus is major healthcare crisis for all of us we are faced with new challenges in all of our lives. After all my time recovering from my fracture I was just getting back into driving and going out with friends and doing things again. Now like all of us I have been social distancing and staying home. With my respiratory complications in the past I am vulnerable to this virus. We hope we can count on your continued support during this difficult time. 75% of OIF’s annual budget is made from individual donations and a lot of those donations come through events and meetings that are now being cancelled. Since we are all home will you join me for a cup of tea while raising money for the OI Foundation. Let's help them so they can continue to provide all the wonderful resources, research, and education they are continuing to do. Can I count on you by participating in Bone China Tea to help continue to build our OI Community and show your Unbreakable Spirit®?