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The Krakowiak’s Attack Hemophilia Back!

Michelle Krakowiak

Michelle Krakowiak

With no known family history to speak of we were absolutely blindsided with Thomas’ diagnosis of severe Hemophilia A. After his 3 day NICU stay where he received fresh frozen plasma, a blood transfusion and factor VIII infusion before discharge, our first few weeks of his life were spent with a lot of fear and grief as we wondered how this life long disease and the necessary treatments would affect both Thomas and our family as a whole.

We were so fortunate to get plugged into Hemophilia of South Carolina within Thomas’ first month of life. Because of Hemophilia Federation America and our local chapter we are refilled with hope that Thomas can still live his best life and not let his hemophilia define him. We want to pay it forward so future families have the same access to the information and community that has helped us put our lives back together.

After learning the importance of maintaining good physical health to protect Thomas’ joints and muscles from spontaneous bleeds we knew we wanted to be intentional about developing good exercise habits as a family. Given our love of Star Wars and our desire to “pay it forward”, joining Team Resilience seemed a perfect marriage of interests. We hope taking the boys on our training runs will help foster a love of physical activity that will benefit their health for years to come.

OCT
25

5 miles in the rain! No stroller meant I could push my pace a bit.

OCT
13

Longest distance yet! 4 miles with decreasing splits 👏

OCT
5

Found a red hoodie for chilly morning runs 🙂 ran without the boys today so my average pace was a good bit faster!

OCT
3

We’ve begun injecting Hemlibra at home. We try to involve Sam so that he knows he is an important part of our team.

Our sweet Thomas celebrated his first birthday this past week. We had many friends and family members participate in a virtual blood drive in his honor!

SEP
21

Our first chilly run. I can now do 3 miles without stopping at a slow pace (~14 minute mile)

SEP
11

Thomas couldn’t hang for our run today! 3.2 miles in 47 minutes.

SEP
5

My first time giving blood! I’ve always been afraid to give blood but gratitude for Thomas’ donation encouraged me to fight back against the fear and pay it forward.

SEP
3

The force is strong with this one. Three loading doses down!

AUG
28

Our second loading dose of Hemlibra - I did the whole injection process myself today!

AUG
20

We are going to our clinic for our first loading dose of Hemlibra and the specialty pharmacy sent Star Wars band-aids with our syringes!

AUG
18

Joey and I officially joined Team Resilience today to run in the half marathon. My goal is to finish the race in 2 hours and 30 minutes so I have a lot of work to do! The stars aligned and I was able to get both boys out the door to begin a couch to 5K training program this morning. Thomas wore red of course.

First training day! 1.9 miles of running and walking in 30 minutes

Comments

$415.09
raised of $1,100 goal
 

Recent Donations

1. Chris Stokes
In honor of my grandson Thomas
2. Chelsea Swanson
Thank you for turning a challenge into an opportunity to educate and bless others! Love you guys!
$25.00
3. Emma Mittendorf
Sorry I’m not eligible to donate blood or plasma, but I’m glad we have a monetary option! Amazed at how you all handle this tough situation, but not really surprised at all at your ability to adapt and take action to deal with it! Thomas is blessed to have you all.
$30.09
4. Pauline Worusski
We love you Baby Thomas! Happy birthday! 💜 Pauline & Sebastian
$25.00
5. Hayley Mirek
Go Michelle! I’m sure you’ll smash your timing goal. And happy birthday Thomas!
Captain

Team Krakowiak Attack!

$420.09
$1,800