A Touch of Scarlett, our journey with a rare bleeding disorder

Each year people from all walks of life come together for local chapter walks to help support the National Hemophilia Foundation in its quest to support research and services for people with bleeding disorders. From Spring to Fall individuals of all ages, from Anchorage to Honolulu raise money and find sponsors while dedicating themselves to making a difference and spreading awareness. My local chapter, the Hemophilia Foundation of Northern California participated in it's 8th annual walk at the beautiful Lake Merritt this year. It was a wonderful Spring day and we couldn't have asked for better weather. Our family and friends came from all over to walk with us this year!! This is the 3rd year my family has participated and I'd be lying if I said this year didn't take the cake. I was so moved by all of the friends and family that came from all over Northern California to walk and support us this year and it truly brought me to tears several times through out th...

As I was sitting at the computer the other day preparing for an upcoming interview I have about life with a rare bleeding disorder, Scarlett sat down beside me and started reading the questions. As she started to answer them back I felt compelled to write it down. . . . Her answers were too cute and insightful not to share and so I decided to include them on my blog. A few details about your life: Your age now, where you live, what you do, hobbies, etc.   My name is Scarlett and I am 7 yrs old. My favorite animal is a zebra. My favorite color is yellow. I make my Mom happy by giving her massages with my brother. When I was in class one day we were doing math and I did really good because I did every single one in a really fast amount of time. If I had a pet kitten I would feed it and comb it and I would do the same with my other pets too. My editor said you have a storage pool / platelet disorder — is that correct? What’s the name of the disorder? Please tell me a little bit...

While talking to other bleeding disorder parents online one day, one of them mentioned that she had known someone with hemophilia that had her child's wish granted through the amazing Make a Wish Foundation.  After asking relatives and friends their opinions of whether or not this was something I should look into. . . I decided there was no harm in just filling out the form on line and to be honest with the on going controversy over whether bleeding disorders are life threatening left me feeling pretty skeptical.  Within 2 weeks, the Make a Wish Greater Bay Area office got hold of me to have a phone interview.  During this interview I gave them a lot of contact info about my husband and I as well as some info about Scarlett's bleeding disorder.  They told me the next step would be getting hold of her hematologist and getting approved that Scarlett has a life threatening illness.  After I heard from them to he honest I didn't think we would hear back from them....