Blazing Steeds on the Hemophilia 5K Walk-a-thon

Mark and I have started a team for the Hemophilia 5K Walk-a-thon (held Sunday Sept 28, in Phoenix).
We're recruiting people to join our team, get a t-shirt, and support the cause.

If you're interested, go to the Blazing Steeds fundraising page (isn't that a great name? I came up with it myself :)

I haven't written about our hemophilia story, but I thought this would be a good place for those who've never heard it (or as a refresher for those who have).

Jaxon and Asher have severe hemophilia A. They are missing the genetic code that makes a protein essential for clotting blood. (It's called Factor 8 because it's the 8th in a clotting cascade. Without every domino, the process fails). So, their bodies don't make this protein at all, so their blood doesn't clot.
At all.
So in 2002, our first baby boy, Jaxon was circumcised, and it didn't stop bleeding for 24 hours. Diagnosis was one thing, but understanding the treatment was another.

Everyone reassured us that our baby would be fine. But, they said, he could have spontaneous bleeding (not from trauma) in his joints, organs, or muscles. Even in his brain. And, since he was a baby, we'd never know. So, of course Jaxon had colic, and when he would cry for long bouts, we would wonder if he was bleeding. We were never confident.

Jaxon had a lot of bruises, but not all of the problems other parents of children with hemophilia had. He didn't have bleeds in his forearms from banging his arms on the high chair tray. He didn't bleed while teething, and we never got reported to CPS for a child with too much bruising.

After he started walking he stopped abruptly and cried in pain. After a few hours, we suspected a bleed in his left hip. We treated him with the very expensive, but very safe and effective medication called factor (it's a synthetic factor 8 protein) and his symptoms disappeared.

After this first bleed, our hematologist medical team recommended a port-a-cath as a way to access deliver the factor into Jaxon's blood without having to find a vein every time. Jaxon then began prophylaxis, or preventative treatment.

The port-a-cath required surgery, and it was difficult to let them put my baby under the knife at 13 months old. But, we have been so glad that we did. Now age 6, Jaxon still has his port and gets his infusions 3 times a week. He has only had a handful of bleeds ever since.

After his diagnosis, we did genetic testing and determined that I am a carrier for hemophilia and that my mother was not, which means that it was a genetic mutation that occurred when I was created. So, since one of my X's is affected, I have a 1 in 4 chance of having a son that has hemophilia (and the same chances for having a girl that is a carrier).

When I was pregnant with Asher, I had an amnio and learned that he, too, would have hemophilia. It was a difficult time, but we have been so blessed with Jaxon's health that we weren't as scared as we were when Jaxon was born.

Everything went well with Asher until he got a big goose-egg on his head. Although it wasn't a brain bleed, it was on his head, so it was a concern. After we treated it, we decided to place a port in his little 8 month old body. That was so scary. But, he did great, just like his brother.


He's 2 1/2 now and hasn't had any joint or muscle bleeds that we know of. He has had some trauma (like when he sliced his head open on the minivan) and we've treated for those incidents.

So, we have been very blessed, or very lucky, but still wonder what the future of hemophilia holds for our children. Some possibilities are inhibitors, where the body attacks the factor 8 protein as a foreign object.
At best, hemophilia is inconvenient. At worst, it is deadly. Both boys wear medicalert bracelets on their ankles as a safeguard. We have to discuss these issues with teachers, babysitters, friends and family to make them aware of our children's special needs.

So far, our children's lives have been nearly normal, and that may or may not continue. They can play most sports, provided they infuse beforehand. (with the exceptions of football, boxing, and hockey) They will not be able to go away from home without parents until they can learn to self-infuse, which will probably be around age 9 or 10. Their ports will come out eventually (they usually only last for a year or 2 in cancer patients) and they will begin to infuse peripherally, through their veins.

We anticipate the future with much hope and continue to look forward to a cure, which is really not that far out of reach.
We just need a little luck and a lot of support.