The First Protector: The Tristan Project is Born
July 27, 2007 – All I can say is keep praying because your prayers are working! Once we found out Tristan had osteoma cutis (OC), Michael and I practically have not slept. Instead, we are immersed into this rare skin disorder to try to understand what we are up against. Michael already has a large binder called “The Tristan Project” and it is full of paperwork, scientific articles, and case studies. The scary part about this disorder is there are several different types. Some are more mild and wart-like, and every so often you can get them removed with laser treatment. Other diseases associated with OC produce severe immobility. For example, one of the associated diseases is called Progressive Osseous Heteroplasia (POH) in which normal bone forms within muscles and connective tissue from the superficial skin layers. One article I read states there are only about 60 known cases of this disorder in the entire world. In all cases, this disorder started in infancy, and by the time each patient reached 12 to 13 years old they were either wheelchair bound or progressed to the point where they needed feeding tubes. Of course, this scares me to death, because neither of us want to bring a child into the world just to watch them suffer. I cry many nights with thoughts of the future Tristan could face, and the life he may never have the ability to experience.
Once the pediatric dermatologists determined Tristan had OC they referred us to pediatric endocrinology. The earliest, however, they can get us in is August 20. Michael and I were appalled by this date, because of the rarity of the diseases associated with OC. I called and explained this to the receptionist, and she just replied, “We are being generous to give your the August 20th date.”
So how are your prayers working? God is stronger. Back in the summer of 2001, Michael and I hit the road for San Antonio, Texas where we lived for the summer while Michael attended Officer Basic Course in the Army. We rented a one bedroom apartment, and above us lived the Olsen’s. They were a nice newly married couple who were also there so the husband Pete could attend the same school. Stephanie was the wife and she and I became friends. We kept in touch on and off since that summer, and they are also on Tristan’s baby update list. This is where I feel your prayers are working . . . when Stephanie got the e-mail explaining Tristan was sick she forwarded it to Pete. Well, Pete, like most soldiers was sent to Iraq, and while he was there he met LTC Bauer, who now serves as the Chief of Pediatric Endocrinology at Walter Reed Army Medical Center. Pete forwarded my e-mail to this doctor, and he is now very interested in helping us as soon as possible. To make a long story shorter, thanks to the Olsens (GOD BLESS YOU), we now have an appointment August 1 in Washington D.C. at Walter Reed. Tristan will examined by pediatric dermatologists and endocrinologists from Walter Reed and the National Institutes of Health (NIH). There is also a possibility a doctor or two from Johns Hopkins will attend also. One of the Johns Hopkins doctors had a case in 2001 very similar to Tristan’s, so we are interested to talk to him more about the outcome of this patient. They will also take Tristan’s and our DNA for genetic testing so we can determine if this was passed from us or if it is a spontaneous mutation just in Tristan. It could also give clues to what form it could be depending on where the mutation is located in the gene. We could also end up traveling onward to Philadelphia on Thursday to see the specialist who deals with another subset of this disease called Fibrodysplasia Ossificans Progressiva (FOP) and also POH, both which can cause muscles and other connective tissue to turn to bone. FOP even seems to fuse joints. Most people with this disease are wheel chair bound by their 30′s, and often do not live significantly longer than age 50, but the outcome is better than POH from what I can tell. As you can see, however, none of these disorders associated with OC are good.
Tristan’s parathyroid results came back normal, which is what we expected given his phosphate and calcium were normal, but this does not mean things will not start to change. We pray hard for Tristan and his doctors, because we know he will have this disorder the rest of his life. We hope it will not impede the quality of his life too much. While I still feel scared to death for Tristan I know Michael and I feel his medical care is now going in the right direction. So, THANK YOU for praying because your prayers are working. We still need them though as there is a long haul ahead for us.