Stories Archives - Page 2 of 2 - Arizona Hemophilia Association

A Retreat Treat

Diane's experience at the Women's Retreat two weeks ago: This year was the first year I participated in the Women’s Retreat. In previous years I felt I was “too busy” and chose not to participate. However, this year I have decided to do more activities for me and my well-being. Boy, am I glad I went. Diane, Amanda (daughter), and Yolanda I had not been horseback riding in a…well…lifetime and I was nervous about mounting and riding. The staff at White Stallion reassured me and I was lucky enough to be matched with a “young feisty” steed, Rawhide. He was quite the character but we were a match. He liked to snack, couldn’t sit still, tripped on rocks, and listened when he wanted to. We had a lot in common from the get-go. Thank you, Rawhide, for helping to build my confidence. If I can ride that large school bus-sized horse without killing myself, then I can do ‘bout anything. "Rawhide" The weekend was an emotional one for me. I was excited to be spending time with my daughter and some fantastically strong women and I really enjoyed sharing our thoughts, troubles, and jubilations together. I cried and laughed and relaxed all at the same time. I would tell you more, but what happens on retreat, stays on retreat. I returned home exhausted yet rejuvenated. I am definitely looking forward to returning next year. -Diane

Meet a Dad in Action 2

Another interview with a Dad in Action. Remember to contact Jessica about the next event! :)Meet Tom1. Programs you participate in the AHA:The biggest would be annual meeting, then Camp HUG, and the Salsa Challenge and Walk 2. What are you most interested in gaining from Dads in Action?It interested me to see if there is something to gain from this or even if there is something I can give back as a dad who has dealt with issues having a son with a bleeding disorder. 3. What would you tell a dad who hasn't attended an AHA event, but is considering it?Well I hope that as a parent of a child with a bleeding disorder, they would look into all options and avenues to help cope with whatever problem they encounter and use all the tools that are available through the Association to hopefully find a solution or at least some type of answer. So with that I would strongly push them to attend at least the Annual Meeting because at least there they can find resources that can or maybe not give them the full answer but the right direction to go. Tom and Dylan Scott 4. It's a day off work for you, what would you be doing for fun? Personally since I'm away so much spending time with everyone either watching a movie together just walking around the mall or someday if we can get Rylee to go camping we can add that to the list. 5. What is your favorite activity to do with the kids? Same as question 4, basically whatever they want and we can afford it I'm for it. 6. What do you do to support your

Meet a Dad in Action

Here is an interview with a dad at the last event! Getting excited to join them for the Cardinals game in November? Meet Ken! 1. Programs you participate in with AHA:Camp Honor, Golf Tournament, Salsa Challenge, NOW, Family Support group 2. What are you most interested in gaining from Dads in Action? Fellowship and entertainment 3. What would you tell a dad who hasn’t attended an AHA event, but is considering it? For all our families get out of AHA (CAMP HONOR, Camp HUG, etc), I hope you enjoy giving back as much as I do. 4. It’s a day off of work for you, what would you be doing for fun? Getting out of the City and into the Wilderness 5. What is your favorite activity to do with your kids? I like to be involved with each of my kids in the activites they enjoy doing, It shows my interest in them and in what they like to do. I also get to ask lots of questions that I wouldn't think of asking if I didn't particpate with them in their interests. 6. What do you do to support your child with a bleeding disorder? Send Him to Camp HONOR, HAPY events, ask how the infusion went today, and ask questions.

Meet a Blood Brotherhood Member

Thinking about joining one of our Blood Brotherhood/Dads in Action events? A couple of the guys at the last Night on the Lake event were asked a few fun questions about themselves and their experiences in these programs. If this sounds like something you would like to participate in, join the guys at the Cardinals game on November 25th (contact Jessica at jessica@hemophiliaz.org). Meet Andy! 1. Programs you participate in with AHA: I participate in Camp HONOR, Camp HUG, the Salsa Challenge, the Hemophilia Walk, the holiday party, Blood Brotherhood, the annual meeting, the golf tournament, and in NACCHO. 2. What do you enjoy most about being involved with Blood Brotherhood? I enjoy Blood Brotherhood for the opportunity it provides to men with hemophilia. We get to catch up with each others’ lives, and we get to learn something new, all in a fun setting. 3. What would you tell someone who has not been to a Blood Brotherhood meeting? The Arizona Hemophilia Association deals mostly with children with hemophilia and their families. It’s refreshing to have a program just for us men. We may see each other at community events, but Blood Brotherhood provides the perfect venue for all of us men to interact with each other, in a setting that’s just for us. The atmosphere is open and supportive, and provides an environment for some great conversations between men who have shared common experiences in our journey with this disorder. We share a common bond, and depending on how you view it, an opportunity or a responsibility. An opportunity to support each other, and a responsibility to share with the younger generation, the parents and the children, the lessons we’ve learned from our experiences. Messages about vigilance

Amanda’s Story

Hello, friends. :)My name is Amanda. I am interning at the Association right now and this blog is one of my projects! We are hoping to collect stories from various people in our community and post them here. We want to "stitch" together our stories from different backgrounds and points in our lives, so we can witness how the common thread of a bleeding disorder unites us all.My story:Part of telling my story involves telling my brother's story as well. Personally, I am not a bleeder, but I grew up with a little brother, Anthony, who had endless bloody noses. Before he was diagnosed, there were a lot of scary times in our family. I have some pretty specific memories of sitting next to him while he pinched his nose after bleeding for hours, until blood was in his tears, and watching my parents exchange worried looks as they tried to figure out the next step to take. I know one time my dad had to pick him up from daycare, and when he carried Anthony into the emergency room, the nurses immediately asked who had been shot because there was so much blood. He had blood drawn for testing so many times that he became terrified of needles and it would take several nurses to hold him down for a shot. None of us knew what was happening. The doctors had his nose cauterized seven to ten times in just a couple years. In case you don't know, that is when they basically burn shut a blood vessel in your nose. He was just a little kid and this procedure was done so many times that he how has a deviated septum. Finally, when