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January 16, 2019

  When Thomas was much younger, we spent a lot of time in the hospital and as all moms know, keeping a toddler entertained for hours is challenging. I don鈥檛 think of him or myself as ancient, but this was pre-tablet days; I would actually haul a portable DVD player and a boxed set of […]

HFA does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific products, treatments, or opinions. Please consult your physician before use of any treatments. We recently had Jackson鈥檚 six-month comprehensive visit at the hematologist. A comprehensive visit is an appointment in which many bleeding disorders specialists meet with […]

  鈥525,600 minutes鈥525,000 moments so dear.鈥澛 Just like the song from the musical 鈥淩ent,鈥 those 525,600 minutes go so quickly, and you feel as though in a blink of an eye the year is gone. As we see the finish line of another year, I can鈥檛 help but look back at 2018 with mixed emotions. […]

  On Liam鈥檚 first day of kindergarten in late August, we brought him to school with a mix of pride, fear, excitement, and tears. Okay, I was the only one who shed the tears, but we were all ready for this big day to arrive.聽 Though I was nervous, I had spent a lot of […]

November 21, 2018

My first baby was also my first baby with a bleeding disorder. My husband and I did not know this while he grew inside of my body. So instead of learning about factor products, ports, or how to keep him bleed free, I read about natural childbirth, how to make my own baby food, what […]

About a year or so ago, I thought it would be a great idea for HFA to apply to be a Charity Partner for the Marine Corp Marathon in Washington, D.C.聽 When we were selected, I was beyond excited.聽 Running a marathon was on my bucket list.聽 I know, really clich茅, but true.聽 It was […]

September 26, 2018

My boys went back to school聽this past week, and while I’m not exactly a pro, I have done this before. My youngest, Myles started first grade while my oldest, Zachary, began fifth聽grade. The first week of school is exhausting, overwhelming, and frustrating.聽It won’t be a picnic for a child with a bleeding disorder and a […]

September 12, 2018

We鈥檝e been lucky enough to have Maddox home with us since he was diagnosed at 6 months old. My husband works nights, so he watches him during the day. We pulled him from daycare at 6 months because we were worried about other kids throwing things at him, and potentially him making the wrong move […]

Next week, my 15-year-old son with severe hemophilia A will go back to school. Normally at this point in the summer, I鈥檝e done my due diligence by asking for his teachers鈥 names, ensured his schedule doesn鈥檛 have him running all over campus, and asking for a meeting with the powers that be to teach them […]

I recently had the opportunity of volunteering to be one of the nurses in the infusion center at the annual HFA symposium. I had the privilege of working with two amazing nurses that work in the hemophilia community. I quickly realized that they both had so much knowledge in the hemophilia world!聽 l learned so […]

This post is written as a special shout-out to my husband; a hemo dad, and all the other caregivers who have patience just like my husband Shane. I鈥檓 pretty lucky to have a husband who is very involved in Maddox鈥檚 infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]

Soy Sylvia Verardi y vivo en la isla de Puerto Rico. Mucha gente no sabe esto, pero Puerto Rico es un territorio estadounidense en el Caribe; est谩 bastante cerca de las Islas V铆rgenes de los Estados Unidos. Somos un Estado Libre Asociado y el a帽o pasado pasamos por dos huracanes, Irma y Mar铆a, que nos […]

Every year at Symposium, there is some special moment that defines that year鈥檚 event for me. As we kick off our 2018 event tomorrow, I鈥檓 reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.) 聽 This picture encapsulates our […]

Some of us love exercise.聽 Some of us (me!) hate it but love it when you鈥檙e done.聽 What do you find to be the hardest part of exercising?聽A lot of times it鈥檚 finding the time.聽As moms we鈥檙e pulled in a thousand different directions all throughout the day.聽 Between jobs, kids, and spouses, there is never […]

When Scarlett was diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn’t be able to play most sports. As she went from toddlerhood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious […]

My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we […]

Disclaimer: At HFA, we value all opinions. This blog only reflects only the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 AM, on April 20, 1999, in Littleton, […]

Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]

When I committed to writing this week鈥檚 blog, I had no idea what I would blog about until I went to see the movie 鈥榃onder.鈥 Wonder is about a boy named Auggie who was born with a facial disease called聽mandibulofacial dystosis, also known as 鈥淭reacher Collins syndrome.鈥 Due to Auggie鈥檚 medical needs, which require the […]

Puerto Rico, Isla del encanto, conocida por sus bellas playas, gente amigable y amable, en donde se baila la mejor salsa y se degustan los mejores sabores caribe帽os. Arropada por el Mar Caribe y el Oc茅ano Atl谩ntico. En donde se habla espa帽ol y es un territorio ligado a Estados Unidos como Estado Libre Asociado y […]

I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn鈥檛 anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]

鈥淪o, he鈥檚 still wearing the helmet?鈥 The question, posed by HTC staff at our recent annual visit gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic 颅 I鈥檝e seen the comment threads on […]

It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy鈥檚 Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound […]

It’s been two months since wildfires ripped through Northern California leaving a path of destruction in Sonoma and Napa counties like I鈥檝e never seen before and leaving a scar on all of our hearts. I got to see firsthand the importance of community and was proud to see our bleeding disorder community come together to […]

Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session, was […]

I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia.聽 They can鈥檛 understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds.聽 How could anyone find good in dealing with a nonsensical insurance company?聽 Obviously, I could […]

The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can鈥檛 remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]

When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]

If you look up National Caregiver鈥檚 month on your computer, you will find several items from the Caregivers Action Network (CAN) before anything else. If you look through the stories, tips and suggestions you will see that most of them relate to adult children caring for parents. You can find the 2016 proclamation from President […]

I lost my job on a Monday. The following Tuesday, I was making the hour-long trek to our HTC for bi-monthly prophy for my 15 month old son, Ben. I had a lot of time to think about what had just happened, what in the world I was going to do, and where to go […]


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