Catalog of FOP Resources
Fire House Letter
Peter and Jeri recognized very early that once the shoulders of their son with FOP become fused, he could not crawl anymore. This would not have been a large concern, except for the fact that firefighters suggest that you crawl under the smoke when exiting a fire. Since Daniel was a big fireman fan, they were visiting fire station houses often and they asked many fire fighters about what to do in these circumstances to protect Daniel. Eventually they were told to write a letter to their local fire department explaining FOP, describing Daniel’s limitations as a result of it, mapping the location of Daniel’s room, and emphasizing the facts of FOP life, specifically always minimize trauma and never pull up Daniel’s arms (pick him up under the legs and back instead). The response was wonderful. The firemen not only visited with their best truck, making Daniel the envy of the neighborhood kids, but they were entered into a new emergency crises response system. Should there be any fire emergency at or near their house, they are now confidant that Daniel will not be accidentally injured in an FOP way by a well-meaning but uninformed firefighter. They were told that the best time to inform authorities of a special situation was during a calm period, not during an actually emergency. That way there is time for the family to supply supporting papers, like articles, pamphlets, letters etc. and for the fireman to read them. Since this Fire House Letter has the effect of a safety gadget, protecting Daniel from injury, it is being included in this catalogue. Sources/Directions: A copy of their full letter, altered to be less Daniel-specific, is copied here for your convenience. Please use it to increase the protection of your loved one with FOP. Dear Sir: We are members of the community served by your department. We live at ___________________ and a member of our family suffers from a rare genetic disorder, Fibrodysplasia Ossificans Progressiva (FOP). A fire fighter recommended that I notify my fire department in writing of _________’s special needs situation so that (s)he can be properly protected in case of an emergency. It was suggested that I direct my letter to you for review and appropriate forwarding, such as to the ambulance service. Thank you for your help in this urgently important matter. FOP is characterized by painful muscle lesions and large swellings that build a “second skeleton” that immobilizes and deforms the body. It is a progressive condition, accelerated by trauma, that turns healthy muscle and connective tissues into bone. When this FOP bone bridges a joint, it locks that joint forever, ultimately causing severe immobility. ____________ wears a Medic Alert emblem with ID #_________ and is currently affected by FOP as follows: __________________________________________________ ______________________________________________________________________________________ ______________________________________________________________________________________ From your point of view, what is important is that ___________ cannot drop and crawl through a smoky or fire filled room. Furthermore, since trauma accelerates the FOP disease process, any physical trauma to ___________ must be avoided. It would cause a flare-up of the FOP and result in additional bone formation and mobility loss. His/Her arms must not be pulled up or away from the body. If someone must physically handle him/her, they must do so gently under the legs and back. Unless it is an imminently life threatening situation, it is essential to ___________’s future that the time be taken to avoid any physical trauma to him/her. I do not care if the house burns to the ground in the meantime, as long as ___________ is not hurt by the fire or the rescue. With this letter, I wanted to give you a sense of what FOP is. But it is not ________, who is wonderful! He/She loves __________________________________________________________________________ and is an ordinary human being, except for the genetic nightmare not of his/her choosing. Thank you for your time and courteous attention. If there are any questions or if I can be of any assistance in the processing of this information, please contact me by telephone at __________________________. Very truly yours, __________________________________ Price: $ Alternatives & Related Items: Comments: You never know what will happen when you open up about FOP and its effect on your life. At the very least, it improves public awareness of FOP. It can also give people an opportunity to surprise you with their offers of help. If you are very lucky, you may even make a few friends in the process, like we did. Since our Fire House letter, we have since been invited to firehouse barbecues, open houses, graduations, and an awards ceremony!
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