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Infusing Love: It鈥檚 About to Happen

July 19, 2016

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.聽 He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the […]

FDA Releases “Voice of the Patient” Summary from Patient-Focused Drug Development Initiative

July 14, 2016

In September 2014, the U.S. Food and Drug Administration hosted a public meeting as part of it’s Patient-Focused Drug Development initiative, a 5 year initiative to learn more from patients across a variety of disease and disorders. We were proud to be a part of this meeting and provided support to several of the patient […]

Infusing Love: Away He Goes

July 13, 2016

During summer time, most parents feel they have some time before they have to think about an upcoming school year. However, if you are a parent of a child with hemophilia that just graduated from high school who is on his/her way to college, your worries start long before graduation. Our son Chris wanted to […]

Infusing Love: More than Max鈥檚 Mom

July 6, 2016

I am a modern day success story. I never thought I could have kids. Issues that I now know were caused from my own low factor levels had doctors telling me I 鈥渨ould probably never be able to have children.鈥 I set out to live my life as such. You know those lists of 鈥渉ave […]

Infusing Love: Paying It Forward

June 29, 2016

Bleeding disorders like hemophilia can mean days of isolation, worry, and pain. This life is stressful, but sometimes days are filled with hope and promise. Thankfully, we have had many of those hopeful and helpful moments. When Benny was a baby we had the good fortune to attend a local community picnic and meet a […]

Infusing Love: Because I am a Mom

June 22, 2016

Being the mom of a child with a bleeding disorder, I am used to questions and comments from others. More often than not, they are comical and provide a bit of relief, but there is one comment that seems to be set on repeat, and I am overwhelmed by it. The comment regularly comes after […]

Infusing Love: It鈥檚 Perfect for Us

June 15, 2016

This past April my husband, Joe, and I celebrated our 22nd wedding anniversary. Statistically speaking, I guess you could say we are one of the lucky ones. Throw in the fact we have three kids with chronic illness, now we are defying the odds. By no means do we have a perfect marriage, but what […]

Infusing Love: Superheroes Need Rest Too

June 8, 2016

Ask for help! It seems easy to do, but it takes a lot of effort. If someone would have told me, as a hemo mom, 鈥淵ou need to ask for help!鈥滻 could have saved myself a few unnecessary headaches. I recall a time when my oldest son, Marques, was in the hospital with a bad […]

Infusing Love: Nurturing My Soul

June 1, 2016

Do you ever wish there was someone who truly understood what you were going through? 聽Do you wish you could surround yourself with a support network of other women in your local area, but can鈥檛 find them? Do you wish you had more support from women in the bleeding disorders community? In 2013, a group […]

Infusing Love: Out of the Mouths of Babes

May 25, 2016

When Thomas was in preschool, my family and I attended our first HFA Symposium. One of the educational sessions featured a panel of speakers who shared how to best prepare yourself, your child, and your school for a child with hemophilia. I took copious notes during that session because we were only two years away […]

Conquering Mountains

May 24, 2016

  My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has聽severe hemophilia A, and inhibitors. We live in middle Georgia. Until three years ago we聽knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two聽strong, […]

Infusing Love: My Blood Gang

May 18, 2016

Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]

Infusing Love: Isolated No More

May 10, 2016

Until recently my husband and I didn鈥檛 realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn鈥檛 have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris […]

Infusing Love: I Get To Decide

May 4, 2016

I have an incredibly sweet and endearing child. I have been told on more than one occasion by his teachers that he has a sense for other children鈥檚 feelings, he knows when children are hurting, and he makes an effort to console them. I would love to take full credit for Logan鈥檚 sweet personality, but […]

Colorado Dad Continues Advocacy Involvement

May 3, 2016

Nathan Wilkes has been advocating for his son, Thomas, who has hemophilia and an inhibitor for more than a decade. Nathan began his advocacy by simply writing an essay about his family’s struggle with lifetime caps which was sent to a limited number of contacts within state government and a few friends. He soon found […]

Infusing Love: No Promises

April 26, 2016

What is the last thing you say to your child before they leave the house? Maybe it is 鈥淚 love you.鈥 鈥淏e careful鈥 is always toward the top of my list. Ideally, I鈥檇 like to hear 鈥淵es ma鈥檃m,鈥 or 鈥淚 will鈥 in response. Do I ever hear that?! No! Nick鈥檚 favorite response is 鈥淣o promises.鈥 […]

Infusing Love: To Go or Not To Go

April 20, 2016

Daffodils blooming, grass growing, longer days, and camp applications arriving in the mail mark the arrival of spring. We have a top-notch medical camp facility just forty-five minutes from our home. Our local Children鈥檚 Hospital hematology/oncology department sends staff to run the camp and take care of the kids. Camp is a week of acceptance. […]

Infusing Love: Never Too Young To Advocate

April 13, 2016

For the past four years I have been participating in Hemophilia of South Carolina鈥檚 legislative days. During this annual event, I meet with our local representatives to share my experience of raising a child with a bleeding disorder and why it is important to support state programs that support our community. In prior years, I […]

Factor I Deficiency: A Voice for a Rare Community

April 8, 2016

My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]

Infusing Love: We Keep on Ticking

April 6, 2016

My first national bleeding disorder conference was in New Orleans in 1998. I was overwhelmed at the over 2,000 individuals in attendance.聽My son was two and the enormity of hemophilia hit me hard when I saw men in wheelchairs, using walkers, and not moving their limbs with ease. What in the world was really in […]

Infusing Love: Family Ties

March 23, 2016

I鈥檓 adopted. My birth mother was a spontaneous carrier and when she put me up for adoption she didn鈥檛 know about hemophilia. When I met her about ten years ago I found out that I have five younger siblings. Two of my brothers, Edwin and Steven, had hemophilia and died from HIV contracted in the […]

Infusing Love: Overcoming Obstacles

March 16, 2016

Does anyone really like getting stuck with needles?聽 I don鈥檛 and I only gets labs drawn yearly and have my flu shot once a year.聽 When you have hemophilia and you have serious needle phobia, infusions don鈥檛 go well.聽 My son Chris, who is now 30, admits he still has severe needle phobia. Chris鈥檚 first […]

Qualitative Platelet Disorder: We Just Don’t Quite Fit In

March 15, 2016

Patrick is a typical 12 year old who happens to have a rare bleeding disorder called, qualitative platelet disorder; the diagnosis is descriptive rather than specific – we have been told it is a one in a million condition and they do not know why his platelets do not function properly. We also don鈥檛 know […]

Infusing Love: A Double Edged Sword

March 9, 2016

There are three words that I have a love-hate relationship with. The words are spoken with good intention and they aren鈥檛 fancy, SAT prep course worthy words. They are simple words, in a simple sentence, but there鈥檚 no simple answer to the question. 鈥淗ow鈥檚 Thomas doing?鈥 It鈥檚 double-edged sword. It鈥檚 almost impossible for me to […]

Infusing Love: Too Long to Wait

March 3, 2016

Our insurance provider changed at the beginning of this year.* We knew there would likely be some new hoops and apprehensively were preparing in the months prior to Jan. 1.聽 Thinking I was a savvy bleeding disorders mom getting ahead of a game, I knew this may require some extra work. So first thing on […]

Infusing Love: The Costs of Bleeding Disorders

February 24, 2016

We鈥檝e all read those statistics that discuss the cost of raising a child. Most I鈥檝e seen report the costs in the $250,000 range. Kids are expensive. Just recently, at Target, our cart contained a variety of things that were not on my list and, of course, I had to actively tell my 4-year-old that he […]

HFA Observes February 29 As Rare Disease Day

February 23, 2016

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

Infusing Love: Unplugged

February 17, 2016

For those of us with children who have their own cell phones, how many times a day do you say, 鈥淕et off the phone!鈥 or 鈥淧ut the phone down!鈥? But I challenge you to think about yourself: How many things are you doing right now? Other than reading this blog 鈥 one, two, three more […]

Infusing Love: Second Guessing

February 10, 2016

I deal with mommy guilt every time Jackson has a bleed. When my son is having a bleed, he tells me before there is any visible signs off swelling. I never doubt when he tells me鈥e knows his body. Two weeks ago, we got a dreaded call from the school health aide letting us know […]

Infusing Love: For the Love of Basketball

February 3, 2016

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy. When muscles are used during exercise it helps to keep them flexible and strong.聽 Physical activity also helps individuals to maintain a healthy weight, which keeps less stress off the joints, and has even proven to […]


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