Typical Saturday for a kid with Hemophilia?

Well, maybe not. But what's typical? A weekend choc full of events is nothing new for my active 8-year-old.

Hemophilia Walk: 10:00 am



Soccer game: 2:00 pm



Baseball game: 5:00 pm



He may not have been tired but I sure was. Hemophilia or not it takes a lot to keep up with these kids.

Now if he could put as much effort into his homework.

What an Event!

Saturday's Houston Hemophilia Walk was a smash!

It was a clear, crisp beautiful day and I estimate we had nearly 500 walkers on hand for the 1st ever Houston Hemophilia Walk.

Crowd at the finish line.


As of this posting the walk has raised an amazing $178,378. A total that surpasses the New York City walk from early June. There are three more walks planned for Ohio, Arizona and North Carolina in the next two months. Good luck to them, I hope they all can raise the bar and surpass our total.

For the Killer B's, after several donation goal revisions (we started at $500 and stopped at $2,500) we've shattered all expectations and raised $3,140.

Killer B's before the walk.

Once again thank you all for such a fantastic outpouring of support and generosity.

Jack and Brandon

You can still donate if you were so inclined, see the posts below. Thanks.

We interrupt...

...the vile, salacious and repugnant coverage of Gov. Sarah Palin to remind that this Saturday is the

Houston Hemophilia Walk





We have been amazed and deeply blessed by the outpouring of support of family, friends and others who have made Jack and Brandon's Killer B's team a resounding success.

Our original goal of $1,000 has been shattered. Our next goal of $2,000 is in the rear view mirror. And now we're inching close to our final goal of $2,500.

In the bigger picture the whole Houston campaign is nearing the revised goal of $150,000.

If you wish to support the Killer B's go to our fundraising page and make a donation, big or small, and help us hit our new goal and more.

To those who have helped thank you so much. Your generosity is beyond touching and beyond words. I am left with simply; Thank you, thank you, thank you.

Houston Hemophilia Walk

UPDATE!! -- We've passed our original goal of $1,000. Thank you one and all!! So now we're going for a new goal of $2,000 -- Help out if you can, details below.

Holding out the tin cup, passing the hat...all that. We're raising money for the Lone Star Chapter of the NHF in the 1st Hemophilia Walk. Houston is one of only 5 cities hosting these inaugural hemophilia walks this year.

Hold on a minute...need to watch Michael Phelps go for gold number 8. Yes! Simply amazing! 8 gold medals, 7 world records, Unbelievable!

Now back to our regularly scheduled programing.

Our team is the Killer B's for Brogan and Buchanan. My Jack and his friend Brandon Buchanan.

Brandon and Jack

Here's the letter we're sending out:

Hi friends and family,

How often do you stub your toe, have a bad fall, or bite your tongue? Chances are these are common experiences in your life. Though painful, they are not life threatening. However, for someone with a bleeding disorder, these events can mean another infusion or a trip to the ER. As you know, our son Jack has severe hemophilia A. He gets three infusions a week to prevent internal bleeding. The cost of the clotting factor that he infuses is about $1.20/unit and he receives over 1900 units (3 times a week). As he grows, so does the amount he will need. He has recently started infusing himself; he learned to do this at hemophilia camp this summer.

The National Hemophilia Foundation (NHF) is an organization dedicated to providing families with the education and support they need to deal with the challenges that come with bleeding disorders. We hope to one day find a cure for this condition, but in the meantime will you help us to continue the work of these organizations?

On Saturday, September 6, 2008, the Lone Star Chapter of the NHF will be participating in a nation-wide fundraising and awareness event. The 1st Annual Houston Hemophilia Walk will be held at Minute Maid Park. Registration begins at 9:00am, with the 3K walk beginning at 10:00am.

We would be honored if you would consider walking with Jack's team, "The Killer B's". You can register online at http://www.active.com/donate/hemophiliaWalkTX/PBrogan2 . There you will be able to click on 'register for this event' in the black tool bar. It costs nothing to walk. If you are not able to join us for the walk, but would like to donate instead, you can click on an amount in the yellow box on the right side of the page. There is no amount too small.

Thank you for your support and we hope to see you at the walk!

Sincerely,

Allison Pohl and Pat Brogan

1st Annual Houston Hemophilia Walk

Holding out the tin cup, passing the hat...all that. We're raising money for the Lone Star Chapter of the NHF in the 1st Hemophilia Walk. Houston is one of only 5 cities hosting these inaugural hemophilia walks this year.

Hold on a minute...need to watch Michael Phelps go for gold number 8. Yes! Simply amazing! 8 gold medals, 7 world records, Unbelievable!

Now back to our regularly scheduled programing.

Our team is the Killer B's for Brogan and Buchanan. My Jack and his friend Brandon Buchanan.

Brandon and Jack

Here's the letter we're sending out:

Hi friends and family,

How often do you stub your toe, have a bad fall, or bite your tongue? Chances are these are common experiences in your life. Though painful, they are not life threatening. However, for someone with a bleeding disorder, these events can mean another infusion or a trip to the ER. As you know, our son Jack has severe hemophilia A. He gets three infusions a week to prevent internal bleeding. The cost of the clotting factor that he infuses is about $1.20/unit and he receives over 1900 units (3 times a week). As he grows, so does the amount he will need. He has recently started infusing himself; he learned to do this at hemophilia camp this summer.

The National Hemophilia Foundation (NHF) is an organization dedicated to providing families with the education and support they need to deal with the challenges that come with bleeding disorders. We hope to one day find a cure for this condition, but in the meantime will you help us to continue the work of these organizations?

On Saturday, September 6, 2008, the Lone Star Chapter of the NHF will be participating in a nation-wide fundraising and awareness event. The 1st Annual Houston Hemophilia Walk will be held at Minute Maid Park. Registration begins at 9:00am, with the 3K walk beginning at 10:00am.

We would be honored if you would consider walking with Jack's team, "The Killer B's". You can register online at http://www.active.com/donate/hemophiliaWalkTX/PBrogan2 . There you will be able to click on 'register for this event' in the black tool bar. It costs nothing to walk. If you are not able to join us for the walk, but would like to donate instead, you can click on an amount in the yellow box on the right side of the page. There is no amount too small.

Thank you for your support and we hope to see you at the walk!

Sincerely,

Allison Pohl and Pat Brogan

Self-Infusion Success !!

Jack did it! Yesterday before his baseball game Jack tried self-infusion again and got the vein. Under Allison's tutelage, Jack has been working on self-infusion since he got home from camp a week ago and yesterday was THE DAY.

We are so proud of him. This is a huge step toward full self-sufficiency and ownership of his hemophilia care.

Congratulations Jack!!

Keep it up!

Off to Kamp Krusty

Well, maybe not Kamp Krusty, but Camp Ailihpomeh (hemophilia backwards). Jack is at hemophilia camp this week, he left Sunday morning. Here's hoping for some positive peer pressure and successful self-infusion.

Camp is again at the great Camp John Mark near Meridian, Texas. I'm sure it's hot as all get out but the boys will, as always, have a fantastic time. Pics from camp are updated daily at the Lone Star Chapter Website, here. Below is the first one of Jack (third from right) and his cabin-mates.

Baseball - Jack legging a triple

Jack had a game last night and I remembered to bring the camera (and actually use it!).

Here's Jack hitting a legitimate double and taking third on the throwing error. But hey it's seven and eight-year-old machine pitch, so that's a triple. Jack has severe hemophilia A but that hasn't stopped him from enjoying his natural athletic ability. Ain't factor great!

With two games left in the season, Jack's team is 8-3-1 and in second place.

Baseball...closer to home

This is Jack, my 8-year-old. Jack has severe hemophilia A but thanks to modern factor concentrates and prophylaxis he gets to do things like play baseball and basketball and soccer and swimming. And you know what (he says proudly), he's quite good.