Posted by Karen
Today is Christmas Day… “It’s the most – wonderful - ti-i-i-i-me of the year!”
Miranda, age 6, and her brother Owen, age 9, have ripped into their presents and are now having a great time playing with new treasures. Later on today, we’ll eat turkey, sweet potatos and all the fixings, and even more importantly, will love and enjoy each others’ company. Miranda will even play “Jingle Bells” for us on the piano. 
Before I rejoin the festivities, I’m going to take a page today from my friend Yolaine’s book, and say a very special and heartfelt Merry Christmas to all my friends who live with the effects of rare diseases. This past year, I got to know a wonderful bunch of people in the rare disease community – families newly coping with Miranda’s genetic disease, Fibrodysplasia Ossificans Progressiva, and others with different and varied conditions such as Dup 15, Prader-Willi Syndrome, Maple Syrup Urine Disease, disorders yet to be identified and many more. Every one of these conditions brings heartbreaks, but they don’t define ourselves or our children. It’s so very, very important for us all to appreciate that, and what better time to do so than Christmas? Christmas is a special time, a chance to focus on the things we value and cherish about ourselves and our families, and to set aside (as much as possible) our health worries.
And so, my Christmas wish for all my rare disease friends is for a wonderful, happy, relaxing and joyous day.
Miranda and Owen on Christmas Eve
Before I go, one more thing – a big and profound THANK YOU to my cousin John and his wife Anne, who made an extremely generous and warm-hearted donation to the International FOP Association in honour of our Miranda! I am touched beyond words at this sign of their love.
Finally, Merry Christmas all!
