The 2018 Bloody Fun Run
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43%
 

Goal $1,000.00

$428.00Raised

Please help us to build awareness for bleeding disorders while supporting the BDFW's mission to support research and advocacy. The Bleeding Disorder Foundation of Washington has been a great support for our family since Justin, Hannah and now Nathan's diagnosis of Primary Platelet Dysfunction. 

Our journey as a bleeding disorder family started long before an official diagnosis came. Justin was always known in his family to bleed more than most. Complications arose as a child with cuts, bruises, when he got his appendix and wisdom teeth out. Coming from a large family that spent a good deal of time in Montana his bleeding never received much attention. 

After we were married he had more bleeding than expected when he got his deviated septum fixed but standard blood work had come back fine so we had been pushed off. When we were starting a family, we brought it up again and told they would test a son, this is a really old school thought. When we had a little girl, no testing was done. 

Just over a year-old Hannah was a curious child and she found a steel juice can in the recycling. She cut one of her fingers on it and I knew immediately there was too much bleeding. We raced her to the ER where she received 3 stitches. She had bled for 55 minutes uncontrolled. The ER doctor asked which one of us had a family history of bleeding disorders. I felt vindicated that I had pushed before she was born and betrayed by the misinformation we had received. 

After a year of testing and a few doctors not wanting to treat her for nonrelated medical concerns out of fear we received the frustrating news that Justin and Hannah had a non-specific platelet disorder. Health concerns are supposed to have names and treatments and we didn't have specifics, but we thought that was all we would get. 

When Hannah was three it was brought to my attention that children shouldn't snore. I've was in Kiwanis for many years and appreciated the lunch time speakers that are brought in. That particular Thursday a sleep specialist came to talk to us. Though most of his talk was on the importantance of keeping your weight down and using a CPAP as prescribed his last comments were about children. I must have looked worried because he talked to me after. He asked when Hannah started snoring and I said I could remember her snoring in her bassinet. In fact, we never used a baby monitor because I could always hear her snoring. The revelation that children shouldn't snore is what ultimately lead to a real diagnosis for our family. 

Our family provider sent us to Children’s Hospital after deciding it was probably her tonsils that where the issue. We didn't think much of having them removed even though she had never had infections if that was what was causing her snoring we were on board. Children’s ENT was on board too until they saw the platelet disorder on her chart. Everything stopped and changed direction now we were seeing hematology and getting a sleep study. We were frustrated at first feeling like they had said her snoring was such a risk and now they were hesitating. 

It took a while for everything to be explained. Removing your tonsils was possibly a very bloody surgery with bleeding during the surgery and again when the scab comes off days later. Without a clear diagnosis and treatment for Hannah the surgery was a much greater risk than her snoring. Justin and Hannah where both screened at The University of Washington and just weeks before Hannah started Kindergarten they were diagnosed with Primary Platelet Dysfunction and where given a treatment. We had a name and a medication! 

Life went on and we had to learn what it meant to be a bleeding disorder family. Most days are normal, Justin and Hannah play normal and look normal. Other days we are drawing outlines on bruises and going through band-aids like crazy. Their medication is used on an as needed basis and has its side effects. We were coping well but not really empowered to understand... just survive. Then we got a postcard in the mail. 

Children's Hospital Hematology Clinic had shared our info with the Bleeding Disorder Foundation of Washington and we were invited to attend family camp. We had no clue what that meant but as a mom I was eager for support and education, so we went. 

I can't say enough good things about our weekend at Camp I-vy Jr. Along with other bleeding disorder families from Washington with young children we spent a weekend feeling like we weren't the only ones figuring this all out. Learning about what others were going through and supporting each other. My highlight was a moment with a leader the first night. The kids were playing, and I was getting to know a few people. This leader hadn't met Hannah yet, so he called her over and asked what her medical id bracelet said. As she held out her hand she said, "I have a bleeding disorder," just as we had taught her. The leader said, "so do I." The look on her face was priceless, this was the first moment she realized that there were more people in the world like her then just her dad. 

In the years since we have been welcomed into this community even though we are a minority. Most of the families have Hemophilia a disease that affects factor in the blood preventing clotting. In many cases this requires daily in-home IV treatments. Platelet disorders are very rare, but this community only sees a family with a need. We are so grateful to the families we have gotten to meet and the activities we have been invited to. 

The summer of 2016 Hannah did get her tonsils out. For most kids this is an outpatient procedure but for her it required an overnight hospital stay. We were prepared to stay many days and receive many transfusions of DDAVP, the IV version of her medication and even platelets. Instead things went so smoothly we were home just over 24 hours after surgery. The first few weeks of summer we took it slow with trips to Children's, multiple medication doses a day and monitoring fluid intake, fluid retention being one of the side effects of her meditation. We were so blessed by the amazing team at Children's that took the time to get the right diagnosis and the right treatment so that Hannah can sleep peacefully. I even had to borrow a baby monitor for a few weeks. We had never not been able to her sleeping from our room. 

Last April we added a new member to the family. Nathan was a much-awaited addition, but anticipation was coupled with anxiousness. With Primary Platelet Dysfunction being so rare we had no idea if another child would also be affected. Our doctors took many additional precautions and Nathan arrived with no complications for him or myself. Though we can't officially confirm that Nathan is affected until he is older so that a volume a blood can be drawn without risk to Nathan Children’s’ Hospital feels that his symptoms and of course family history have confirmed it. We hope to be part of research to forward science and treatment for Platelet Disorders. 

Life with a toddler with a bleeding disorder is a little stressful. When Hannah was this age we didn’t know so we thought her bruises etc. were normal kids’ stuff. We don’t limit what the kids can do but we keep a watchful eye. Bloody noses and goose eggs are common place in our house. Hannah is an excellent advocate for her own health and her brothers. We are lucky to have a few years of practice now as our rowdy little boy begins taking his first steps.

Please consider donating. Every donation counts & together we can make a difference. This year the Bleeding Disorder Foundation of Washington has a goal of raising $140,000. That money is what makes things like the camp we went to possible and the Men's group that Justin has gotten to be a part of. It also funds research for many bleeding disorders and advocacy. As a team we have committed to raising $1000.

Comments

  • Alyssa (about 2 months ago)

    Have fun Krohn family! We'll be thinking of you!

  • Susan (about 2 months ago)

    WA

  • Jennifer (about 2 months ago)

    We will pray for a cure

  • Chaim (about 2 months ago)

    Run, Run Run!!!

  • Sandra (about 2 months ago)

    You Rock, Krohn Krusaders!!!!

My Status
Number of pledges received: 14
Goal achievement: 43%
Number of page visits: 900
Days since event: 51
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Event Information
What: The 2018 Bloody Fun Run
Where: Green Lake Park (near the Bathhouse Theatre)
When: Saturday October 27, 2018 at 09:00 AM

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