The 2019 Bloody Fun Run
Donate Now
10%
 

Goal $15,000.00

$1,545.00Raised

Welcome to Team Courageous Cousins and Co.!!! All of you make up our company and we couldn’t be more thankful!

Big news this year is that we’ve added THREE cousins to the Avalos/Dvorak/Kuhlman pack! Kevin and Emily have five month old twins, Eli and Klara and Seth and Carly just added Benjamin this week! Shortly after Eli was born, we found out that he does indeed have Severe Hemophilia A, exactly like Sammy and Louis. Klara and Benjamin are healthy and  just get to jump into the craziness that is life with the risk of severe bleeding in several of your playmates/cousins!

For those of you new to our story, we found out five years ago when Sammy was three days old that he has Severe Hemophilia A, a potentially life threatening bleeding disorder. On that day, we almost lost him as he bled out before our eyes.  We made it to Seattle Children’s in the nick of time and we were truly lucky that the doctors we needed were on site already working on a child in the bay next to us. They quickly saved his life as my mom, Carly, and I looked on. Within hours, determinant lab results were back letting us know that he would have to deal with this bleeding disease for the rest of his life. 

His diagnosis led family members to be tested and we quickly found out that this was going to be a family affair.  Louis, who is now 3, also has hemophilia along with baby Eli. 

The risk of injury and bleeding is always with us, but we have been blessed with amazing healthcare providers, huge advances in medicine, and a community who advocates to ensure healthcare, insurance, and medicine are available to our boys.

All three boys have started a new medicine this year called Hemlibra. Instead of the laborious accessing of intravenous ports every day and daily IV infusions, we now get to do a subcutaneous injection (think small like an  insulin shot) once a week for Sammy, every two weeks for Eli, and once a month for Louis!! It has been life changing! This shot keeps their coagulation in a steadier, more stable state, but never corrects them to normal levels. We still keep IV factor on hand to dose in the event of an injury and Sammy and Louis both still have their chest ports.

in the midst of the medicine, all three boys are growing, engaging, and absolutely amazing!! We are so grateful to you all for supporting us day in and day out and contributing your $’s to make change happen. You helped bring the Hemlibra study to Seattle, you helped us pass important healthcare bills in the state of Washington ensuring preexisting conditions are protected and lifetime insurance caps can not be placed on insurance plans in our state, you helped purchase an ultrasound machine to make the diagnosis of joint and muscle bleeds easier and more accurate, you help educate us in parent support groups and boys at camp.  The list goes on and on and has a direct impact on Sammy, Louie, and Eli. Thank you for giving year after year!

Every donation counts & together we can make a difference.

 

Here are some great donation amounts to consider.

 

$1000 - Send a child to Camp I-Vy

$500- Support 1 parent support group meeting

$450- Send one family to family camp

$250- One Medically Accurate educational opportunity- for better care and better outcomes

$65- One Day of Advocacy in Washington State

 

Thank you! Together we will make a difference.

Comments

  • Linda (about 2 days ago)

    Go Courageous cousins!!

  • Jeanne (about a week ago)

    Love Aunt Jeanne and Uncle Stu

  • Denise (about 2 weeks ago)

    Blessings for good health to you all!❤️

  • Dale (about 2 weeks ago)

    Our love to Louie, Eli and Sammy

  • Jennifer (about 2 weeks ago)

    Sending lots of love to my beautiful cousins!❤️

  • Deanna (about 3 weeks ago)

    ❤️🙏🏻❤️🙏🏻

  • Sarunya (about a month ago)

    Happy Birthday, Sammy!

  • Oakley (about a month ago)

    Sending love & support from the Frisch family!! Happy BIrthday Ava <3

My Status
Number of pledges received: 14
Goal achievement: 10%
Number of page visits: 433
Days left before event: 29
This is the general team page for 'Courageous Cousins and Co.'
See the Team Courageous Cousins and Co.

Event Information
What: The 2019 Bloody Fun Run
Where: Green Lake Park (near the Bathhouse Theatre)
When: Saturday October 19, 2019 at 09:00 AM

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