Briana's Platelets for a Purpose
Organized by: Dennis Nelson
EVENT DATE Aug 16, 2014
A Father's Story
Imagine, that as a child you have bloody noses that last a while for no apparent reason. These I can remember starting around the age of six lasting until around age nine or ten when my mother decided to take me to the emergency room and have a procedure done to fix it. Bingo, problem solved. Fast forward eleven years and my frst son is born, a healthy baby boy, no serious issues besides the fact of a menangitis scare as a newborn, but other than that a great boy.
About five tears later and a daughter is born Briana, blonde hair, piercing blue eyes and a great personality that only a mother and father could wish for. Again, a healthy baby as far as everything else checks out. No major issues, the usual fall down bump her head, until at eigtheen months she takes a tumble down a small flight of stairs and breaks her arm. Even with this set back she is always smiling, laughing and seems to be in a great mood no matter the circumstances.
Age four and the nose bleeds start, first they last 20-30 minutes at a time, we figure a way to get them stopped, but they become perisitent and longer lasting. We seek medical attention to get answers, her primary physician diagnoses her with VonWillebrands. This is all new to us as a family, what is VonWillebrands? how is it going to affect our family? her life? what can we do?
As a father you never want anything to happen to your children that you cannot fix. I felt completely helpless, what am I going to do? how can I fix her? can I fix her? The wife starts looking at every web site possilbe for answers, we both try to find any information on how or where she might have gotten VonWillebrands. By now nose bleeds are lasting an average of one hour to an hour and a half each time. We decide that maybe we should see an ENT (ear,nose, throat) about removing her tonsils, adnoids, cauterizing her nose anything to help STOP the nose bleeds.
With the help of her ENT, we take her tonsils and adnoids out, cauterize her nose and hope and pray for the best. This seems to work for a short, very short time, only to have the hour or longer nose bleeds come back. The scariest moment was when I got the phone call that my wife had to call the ambulance to take her to the emergency room because they couldn't get her nose to stop bleeding. Her nose had started bleeding and after an hour and a half it was still gushing blood. Mind you that we had been told that there could always be a possibility of bleeding to death. I scrambled from work and headed straight to the ER, upon my arrival the ambulance showed up shortly after, they had finally gotten her nose to stop bleeding, approximately 2 hours after it had began. Imagine not knowing if your only daughter is going to bleed to death or be OK.
We have done a couple of skin grafts from her hips to thicken the lining inside her nose, with the thoughts and suggestions of her ENT. Now that she is sixteen and a young adult with young women issues the bleeding has gone from her nose to her monthly menstrual cycle. When she had her first menstrual cycle it lasted more than a week. So it begins another set of questions, how do we help her? how do we get it to stop? The quick answer was to put her on the depo shot, it works fantastically, but has the side effects of weight gain along with all of the steroids that put weight on her already. This I know effects her menatlly and physically, so as a father to a teenage girl it's best to let mom do the talking and helping.
Since our first diagnosis some twelve years ago of the VonWillebrands, we have now added a platelet defect which requires platelet transfusuions and doses of human factor to help wih joint bleeding, bruising and normal healing from cuts, scrapes and other bleeding issues.
The one plus that has come out of this is to know how Briana got this, it's inheritable from me, her father, I too have a platelet defect though mine is minor compared to hers. All these years Iater, had I'd known that I would pass it along to my children possibly would I have not had children. My answer to that is NO, I wouldn't have changed anything except maybe to have known so it was something to look for when both of them were born.
For the past three years we have been doing a charity trap/ sporting clays shoot to help raise money for the Colorado Chapter in Briana's name. Every year we have increased our support and are asking to double even triple our outcome this year. Please donate to our cause Briana's Platelets for a Purpose.
Hemophilia is the THIRD MOST EXPENSIVE DISEASE IN THE WORLD, more expensive than cancer. The average dose of human factor is $6000.00 per dose.
Below is a copy of what the money raised to going towards...
~~Our annual Colorado Walk for Hemophilia benefits those suffering from bleeding disorders in the Colorado community and their families. All proceeds from these fundraising efforts will benefit NHF Colorado and will help the chapter to continue to provide camp and other educational programs, financial assistance, advocacy, and more. Every dollar makes a difference!
The National Hemophilia Foundation Colorado Chapter is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.
Our vision is to create an environment where those affected by bleeding disorders feel like part of a community, part of the solution, and empowered in their daily lives through connection with others who can relate to them and their challenges.
WE CLIMB MOUNTAINS!