Share Your Story: Community Spotlight
As part of the Bleeding Disorders Awareness Month and the #RedTieCampaign, we are spotlighting members of our community who have shared their bleeding disorder story.
The Shea Family
Stephanie Shea was recently provided the opportunity to share her family's story on BloodStream™ Media. Listen to Stephanie share her story - starts at 7:20.
The Krieger Family
Our son, Huxley has severe Hemophilia A severe. He was diagnosed at only three days old. When Huxley was two days old he had a medical procedure. About 30 minutes after the procedure, they realized he wouldn’t stop bleeding and so he was admitted to the Special Care Nursery. The doctors did a plasma infusion to see if that would help and when it did, the doctors believed Huxley may have a bleeding disorder. After doing a cord blood test, the doctors concluded that he had severe Hemophilia A. Unfortunately, the pediatrician who told Kyla and Michael the diagnosis, knew very little. Luckily, they were able to get an appointment with Huxley’s hematologist the day he was discharged.
During the first 1.5 years, the hard part about Huxley’s diagnosis was the day to day. He was not on prophylaxis yet so Kyla and Michael continually checked for bruises and his joints. It was a constant worry that today would be the day for an infusion. As he started to become more active and were starting to see more bruises and decided prophylaxis treatment was on the horizon. Due to four bleeds in the month of September, we scheduled his port surgery for October 2019. We had a successful surgery, but that is was just the beginning of the journey. We had the usual one-week stay in the hospital attached to the IV the whole time which started the 5 weeks of learning how to care for and access the port. In the midst of all this, we interviewed for jobs in Idaho, made the decision to move, and packed up our house. A few days before we moved, we were given the ‘okay’ to access the port and administer the factor at home. We made the move before Thanksgiving and have been doing medicine at home, three days a week, ever since. He is now actively participating in this process by assisting in pushing his own meds.
Even though hemophilia can be a difficult disorder, Kyla focuses a lot on the positive outcomes from her son being diagnosed. Her main focus was on the community, “For me, community has been the most positive outcome, being able to talk to others and being involved in the community helps all of this feel normal. I always have people I can go to if I have questions, the community is always there for me to lean on.” When Huxley was diagnosed, Kyla and Michael didn’t know anything about Hemophilia, but found a supportive community, within the Central California Hemophilia Foundation, who understands what they are going through has helped them through it. In addition to the peer support we were able to find in the community, we felt fortunate and well-supported with the medical team we had in California. Now with our move to Idaho, as a family we have connected with community members from the Idaho Chapter and are working on our relationship with the medical staff. Huxley has shown high resiliency throughout all of this change – moving, transitioning to a big boy bed, and infusing at home.
If you would like to have your Story featured, please contact Michael Krieger, firstname.lastname@example.org.