Monday, February 13, 2012

Hemophilia: It's A Family Affair




My name is Amber and I am a 30-year-old mother of four kids: Dillinger (10), Emma Coalesce (9), Brandston (7), and Elise Mae (3). My boys have severe hemophilia A with inhibitors. About two years ago Dillinger's inhibitor was tolerized. Thank God! Brandston is currently on his fourth round of Immune Tolerance Therapy (ITT) and we just found out that his inhibitor is on the rise again (not exactly the results we have been hoping for). Emma is considered a symptomatic carrier, but we recently learned, through a session at NHF’s annual meeting, that her 27 percent factor level actually classifies her as a mild hemophiliac. My youngest, Elise, is the lucky one of the bunch. She is just a carrier.

Dealing with multiple children with special medical needs has definitely taken its toll. Throughout the years it has molded each of us into the people we are today. I'm sure it will continue to change and mold us in the years to come, in both positive and negative ways. It's not easy, but I believe everything happens for a reason and how we choose to deal with it is what matters the most.

I am excited about the opportunity to share my family's experiences and I hope that it provides helpful insights to other families affected by bleeding disorders. Please post comments and ask questions. I'd love to hear from you.

6 comments:

hemophiliaandhim said...

You've got a beautiful family.

Lisa and Rustin said...

Hi!!!
I've got a little guy with hemophilia severe A. We've had a busy first two years of his life!

This blog is such a neat concept! I look forward to reading more posts!

Anonymous said...

Thank you for sharing, my son is 14 and has severe hemophilia A. TO read about your daughter is so refreshing, to know that there is someone else dealing with a girl having hemophilia. My youngest is 11 and her initial level was 10% it fluctuates. My oldest daughter is a carrier, while my second oldest isn't. Their ages are 21, 18, 14, 11. My email is maridayo@sbcglobal.net

Amber Lynn said...

Thank you hemophiliaandhim! I tend to think so, but I might be partial!

Amber Lynn said...

Lisa and Rustin,

I am so glad that you enjoyed my blog post! I hope you continue to read and also keep up with the other bloggers as well! We all have some pretty interesting stories and hope to encourage others in the community like yourself to share your stories on here too!

Amber Lynn said...

Anonymous,

I am excited to see another parent with a daughter dealing with this. I have noticed more girls coming out of the wood works lately and realizing that they have a bleeding disorder as well...although my girls don't have near the amount of issues as my boys it doesn't change that they are dealing with it as well. Maybe sometime one of your girls might like to share their story?! :)

Thank you for ready, and keep checking in on us...we have some great bloggers sharing some great insight.

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