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

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...

  Female Factor is a large group of women centered around the The Hemophilia Foundation of Northern California bleeding disorder community that have come together to form an opportunity to provides outreach, leadership guidance, advocacy, networking, education and support to any and all women in the bleeding disorder community. The first event that took place in 2017 was our Soul Collage Workshop in Redding, Ca. Women 18 and up were invited to a weekend focused on Signs and Symptoms women with bleeding disorders have and participated in a collage project where we focused on cultivating our courage.         Taking a stroll at Turtle Bay Exploration Park in Redding,CA Courageous Heart Soul Collage Workshop

I started off this year trying not to talk about family camp much with the kids. After last years anticipation turned into such a fiasco, I didn't want to get their hopes up this year and then have the same thing happen. This was our third year attending the Hemophilia Foundation of Northern California's family camp. The first year I went with just Scarlett and we had an amazing time. It was emotional, overwhelming, educational, eye opening and one of the first events I felt truly inspired and welcomed by my local bleeding disorder community. The second year, my son Walker who was 3 got to go. He had been anxiously awaiting getting to go since we returned from the first trip and was heartbroken to get sick, literally on the way to camp. Our weekend was cut short after spending the first 16 hours hauled up in the cabin with the stomach flu. So it wasn't until we were pulling into the now familiar driveway of Taylor Family Foundations Camp Arroyo that I let the exciteme...