Our family's world was rocked when our 3rd child was born. He was diagnosed at 18 months old with Von Willebrands Disease (VWD) which is the most common bleeding disorder. 6 months later we would find out our oldest son also had VWD. We were floored. We had never heard of any bleeding disorder before this. Talk about overwhelming. I felt lost, confused & scared.
Fast forward 4 1/2 yrs later, when our 4th child was born. We had been informed that if we had anymore babies especially a BOY...to make sure he was tested. So we had our son tested at 6 months old. Sure enough he also had VWD. Still super new to VWD...we tried to educate ourselves the best that I we could. But in California, we were limited on what was available to our family.
In October 2014, we moved to Idaho. Within the 1st year of living in Idaho, I friended a lady whom also had a family & a history of VWD! She told me all about these amazing people that educate you and help you in navigating this foreign world. So I took a leap of faith and contacted them.
Since reaching out, our family has been so incredibly blessed...in so many ways!
We have been able to attend Hemaphilia Family Camps in the summers! We have been able to attend Educational Dinners! But the best thing for us has been...being able to meet other families on this same exact journey as us!!! How incredibly blessed we are to have opportunities to connect with: Parents, Children, Care givers, Drug Reps, Dr's, Nurses, etc...that have helped shape & mold our family for a healthier future!
Please help our family & families like ours...to continue on with these important educational events! Please consider donating to our family's team as we set out to Unite in Walking to raise awareness & keep these programs running! Could you spare $1...maybe $5? With each donation...you will help MY family, Newly diagnosed families & families that have paved the way before us...to have opportunities to learn how to infuse their children or themselves! You are helping children like mine to be able to have a safe haven where they can truly connect with other children like themselves, and not feel alone. Before Hemaphilia Family Camp...my children hadn't ever met another child with similar bleeding disorders. I, as a parent, finally had other parents to reach out to and ask questions to, that had faced similar obstacles.
We have 6 children...all whom have variances of VWD. Our 5th child was our 1st girl with a positive diagnosis. Followed by our 2nd oldest, who is also a girl...she was diagnosed after a much needed foot surgery. I can't even begin to tell you how it feels to have a surgeon explain that "they had NEVER seen anyone ooze blood like that before. And until we have a Hematology order in place, he will not do her 2nd surgery." It's terrifying. And our 2yr old is diagnosed via Family History & her symptoms. I am the most recently diagnosed member in our family, after nearly losing my life while delivering our Stillborn son. Complications from having VWD could have been prevented, had we known ahead of time that I also had it.
Educational events are needed so badly to raise awareness, so that other families don't have to face some of the challenges MY own family has faced over the past 10+ years....
For many, a world without bleeding disorders is simply a dream. Thousands of kids and adults affected face internal bleeding, costly treatments and lifelong infusions.
I’m all in to help end bleeding disorders. My personal goal is to raise as much as possible for this worthy cause. Will you help me reach my fundraising goal? It’s easy — just click “donate” to make a secure donation.
Every dollar stays within our community and supports critical initiatives such as funding research to find better treatments, educating medical providers on the latest innovations and care, ensuring families have access to quality healthcare and providing access to the best educational resources available.
Will you help me reach my fundraising goal? Please make a donation today.
Thank you in advance for your support and united, we will make a difference.
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."