Last week I had a great interview with a reporter from The Delaware News Journal Health section regarding an article that they are running about living with OI.   I spent no less than 75 minutes on the phone with her telling and re-living Mallie's story from the beginning.  It brought up some serious emotions that I managed to keep on the down-low for awhile.  Sometimes, I think it is good for me to remember the more difficult times, as it can help me really appreciate the better days, like today.   I'm so proud of Mallie's progress this year.  She worked hard and went through a lot to get here.  

I'll post the article when it runs so you can read it! 
 

 As Mallie's mother, I believe it is my responsibility to keep everyone up to date with events going on in Mallie's life.  Unfortunately (or fortunately), I've never had the opportunity to blog before, but this seems a great way to accomplish this.   With the re-launch of our website www.malliesfriends.com , I'm hoping it will be easier than ever to reach out to our friends and family.  Check it out when you get some time!

We have had a very busy year.  As most of you know, Mallie had a huge surgery in October to replace 3 rods in her legs after she fractured her tibia the day before school started in September.  She recovered slowly, but she is now stronger than ever!  She is walking very well with minimal use of the walker at home.  Her legs look so straight and solid!  It becomes very easy for us to get used to her being so strong.  Sometimes, I can't help but wonder when the rug will be pulled out from under her (so to speak, of course) and she fractures again.  She is always so brave when it happens, but I'm not so brave.  I pray she'll make it through summer without a cast so she can swim at the pool with her friends and go to the beach as she loves to do!

On a different note, we recently had a lovely afternoon at Nemours/AI duPont Hospital for Children where Mallie  cut a virtual ribbon and was the first patient entered into an OI database called the Linked Clinical Research Center (LCRC).  It is a partnership that was forged between AI duPont and the Osteogenesis Imperfecta Foundation along with several other hospitals throughout the nation that monitors OI patients over a certain number of years and gathers medical information pertinent to OI in order to allow for further research that may need to be done to help these children.  Greg was a guest speaker at the ribbon-cutting event and presented a meaningful, tear-jerking speech that touched all involved.  You can look at some of the pictures from that day (and see Mallie's  awesome docs and nurses) on our website www.malliesfriends.com under "press". 

I hope you check in periodically for updates, and thanks for all of your support, thoughts and prayers.

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