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

Late Sunday night fires and winds swept through Sonoma County leaving a path of devastation like California has never seen before. Homes were lost, families lost loved ones and landmarks were burnt to ruins. I live in Rohnert Park, the 1st town south of Santa Rosa and this is how my week played out. . . . The 1st image I saw  Scarlett had trouble falling to sleep that night, the winds were horrific. Trees were swaying, branches were falling on the roof and there was an eary sound to the storm outside. She finally fell asleep around 11:30pm.  I settled in to watch my Housewives show and started scrolling through FB. Around 1am a picture popped up on Facebook I'll never forget. It was an image of flames covering the hillside. And those pictures didn't stop coming. Local news started flooding Facebook stating there were several fires burning in Calistoga and Napa, which is about 25 miles East of Sonoma County. Within an hour the fire traveled West and Santa Rosa ha...

Every year children from the Hemophilia Foundation of Northern California (aged 7 and up) and other foundations are given the opportunity to attend Camp Hemotion. A camp just for those affected with a bleeding disorder. Making the choice to send Scarlett to a week long camp was an incredibly tough decision, but I'm so grateful I agreed to let her go, as I know the memories and independence she gained will last her a life time. Last year Scarlett wanted to attend but I didn't think she was ready and I know I wasn't. So we set our sights on this summer and Scarlett had been eagerly awaiting it's arrival ALL year long. I dropped her off on a Sunday. The bus picked her up in front of the Oakland Children's Hospital, which is about 2 hours away from my house. I remember the drive there that day, seemed to take forever. I think I had been in complete denial up to that point.  I had been abnormally calm and walked into the situation thinking I was going to be fine....

Every so often we are blessed with an invitation from the Make-A-Wish Greater Bay Area to attend a local event where they are providing Make-A-Wish Families the opportunity of a lifetime . . . .yet again. This year we were invited to the Sonoma County Raceway for a day of fun and special treatment at the Toyota NHRA Sonoma Nationals. We had no idea what to expect upon arrival even though the race way is 20 minutes from our house. My husband and I had never been to a drag race before, so we were absolutely astonished to turn the corner of sonoma raceway and see the flood of cars, mobile homes, and buses that were there for the race. This apparently was a HUGE event for Sonoma County and we all were suddenly feeling more anticipation as we winded our way to the parking lot. We quickly made our way into the raceway and to the Make-A-Wish hospitality pavilion in the NHRA pro pit. This is where we were treated like royalty with a full course meal, all you can drink sodas and water an...

For the past 4 years my family has been proudly participating (alongside the Hemophilia Foundation of Northern California) in the National Hemophilia Foundations' Hemophilia Walk. Every $1,000 raised sends a child to Camp Hemotion, which Scarlett would be attending for the first time over the summer.  Each year our friends and family have come to support us and each year our group has gotten bigger. I'm truly grateful for all my friends and family that came to support us and hope we can continue this annual tradition. We had an amazing amount of friends and family walk with us this year.  This year I was also granted the opportunity to plan and take charge of the kids area. An area of our small local walk that needed some improvements and now had a willing candidate to take it on. I had been on the phone, emailing and staying in contact with other members of the walk committee for several months, so the excitement leading up to the day seemed to succeed all other walks...

Originally posted for HFA's Infusing Love blog at  http://www.hemophiliafed.org/news-stories/2017/04/infusing-love-virtual-hugs/ April 19, 2017 I need to send a big hug and thank you to all the bleeder moms who have supported me. I thank you for the endless support you continue to give me. But i especially need to send a special hug to the one mom who has been there to pick me up these last few weeks. If I’m going to put myself out there and be totally honest, my inner self has been struggling a lot lately in pretty much all aspects of my life. Recently as I sat down scrolling through my phone, trying to decide who to call as I was sobbing over my marriage, my career, my parents’ health and the sudden attitude my children have towards me, I didn’t call a family member. For the first time ever, I called my bleeder buddies over a family member. I’ve been blessed in the last few years, with the opportunity through my local member organization, the Hemophilia Foundation of Nor...

My daughter and I were both diagnosed with a rare storage pool disorder in 2012. She was four at the time and covered in bruises from learning how to navigate through life as most toddlers do. After a call to social services from a concerned citizen who saw bruises on a child (and her mother) and we decided it was time to get help and some answers. I'd been having signs of a bleeding disorder my entire life... nose bleeds, unexplained bruising, petechia, extreme bleeding during dental work all of which were always summed up to...."you're just an easy bleeder and bruiser". A year later, tons of Dr appointments and a half dozen tests and blood draws and we finally got a diagnosis. Platelet Storage Pool Disorder-a bleeding disorder that would keep my daughter from playing any contact sports, require her to be accompanied by an aide on the playground and have a life of restrictions.  Shortly after our diagnosis I started sharing our story in hopes of finding a treatme...

Originally posted for HFA's Infusing Love blog at http://www.hemophiliafed.org/news-stories/2017/02/infusing-love-six-lessons-learned/   Infusing Love: Six Lessons Learned February 15, 2017 A lot has changed since my daughter was diagnosed with a platelet storage pool deficiency in 2011. Initially, there was little information and case studies to look to for reassurance. Not having a treatment plan led to many fears, doubts, and unknowns and wondering if I could make it through another injury or trip to the emergency room. I cursed the world for giving her a bleeding disorder. But thankfully over the last few years, diagnostic testing has become more accessible for patients and more information is available. Along with that, Scarlett has gotten older, the injuries are less frequent, and we are finally getting to experience what it’s like to drop your child off without waiting by the phone to find out something bad has happened. I’m able to see things a little clearer no...