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Infusing Love: The Gasp Factor

October 23, 2013

We are doing it. We are signing our son with severe hemophilia up for basketball. So why do I feel so weird about it? We have full support from our HTC for him to play and for letting him be overall active. We are a huge sports family; we especially love basketball. Our older girls […]

CHOICE: Improving HFA Services for the Community

October 22, 2013

To all of you who have taken the time to participate in the CHOICE (Community Having Opportunity to Influence Care Equity) Project by taking the survey, thank you. For those who have yet to take the survey, please do (call 800-230-9797 or go to choice.hemophiliafed.org). CHOICE is about the bleeding disorders community and working with […]

Infusing Love: Standing Up (In a Wheelchair) to Bullying

October 16, 2013

Thomas’s first day of third grade was spent in a wheelchair, thanks to an ankle bleed. It certainly wasn’t the first time he had to attend school in the ‘chair,’ but I hated that it had to fall on the first day of school. We’ve always been very open about hemophilia – in first grade […]

Inhibitors Will Not Inhibit Our Family

October 10, 2013

I’m sitting and watching my son Blake play catch in the park with a friend. He runs for the ball and trips on a rock and lands in the dirt. I stay seated…and it’s really hard. I remind myself that we are in a different place now, but it’s still very hard. A year ago, […]

The Elephant in the Room

October 9, 2013

By Kimberly Haugstad Benny had those dramatic finger print bruises that a lot of babies with severe hemophilia get. 聽Moms know the ones: thumb prints in front on each side in middle of ribs, fingerprints in back where you leverage his weight as you pick him up, bruises all over the body.聽 I remember agonizing […]

Infusing Love: The Bullies Won the Battle; Not the War

October 2, 2013

When we send our children off to school, we trust that they will be in the good hands of school staff to keep them safe 鈥 both physically and emotionally.聽 But what happens in the hallways at the lockers or on the playground at recess, when school staff is out of sight or not around […]

Infusing Love: Keeping “Watch”

September 25, 2013

We were at the park on one of the few sunny days that seem to permeate a cloudy, dreary month of June in Minnesota when I heard a women commenting about the 鈥渨atch鈥 on my son鈥檚 arm. 聽聽I looked down at Logan鈥檚 wrist, and felt comforted seeing his medical alert bracelet firmly in place, as […]

Infusing Love: Prepared for Anything

September 18, 2013

Being prepared took on a new meaning after having Max. It’s frightening and frustrating to know your child is hurt, but the key is to remain calm. Whether you’re on a trip or stranded in your own home, it never solves anything to panic. For me, the hardest part of adjusting to hemophilia was what […]

A Bleed and No Money

September 12, 2013

I am a single mom with two sons with mild Hemophilia B. We receive public assistance through a state program and the eligibility requirements include 20 hours of community service each week. Normally, my sons鈥 hemophilia is controlled but one day my 10 yr. old son received a cut on his finger. I bandaged it […]

Guilty As Charged

September 11, 2013

Snakes can be poisonous. I have tried desperately to avoid them since I was about eight years old and was innocently climbing a tree and one slithered up next to me. 聽I don’t always succeed. Guilt is also poisonous. 聽I have tried desperately to avoid it since Thomas was born. I don’t always succeed. This […]

We’re All In This Together

September 4, 2013

聽By Sonji Wilkes I never could have imagined that hearing the words, 鈥淭homas has severe hemophilia,鈥 would equate to being thrust into a world of inspirational people and unexpected acts of kindness.聽 When Thomas was diagnosed and the doctor asked, 鈥淒o you have a good insurance plan?鈥 my mind immediately focused on the challenges we […]

Infusing Love: Mom: On My Nerves, But Always Has My Back

August 28, 2013

One of the ways many moms have learned the most about raising a child with hemophilia is by talking with our community鈥檚 鈥淏lood Brothers,鈥 the guys who have grown up and moved away from home, whether they be in college or have grandchildren of their own.聽 These men are able to give it straight about […]

Infusing Love: The ABC鈥檚 of Hemophilia

August 21, 2013

My son, Jackson, will enter kindergarten this fall. Some parents are happy for this new journey and some are dreading it; either they aren鈥檛 ready for their child to grow up or their child has a chronic illness and they are fearful of the unknown. I鈥檓 a mix of all of the above. Jackson is […]

Generosity Reality Check

August 14, 2013

By Kimberly Haugstad Last month, we spent the July 4th holiday at a festival on the Mississippi River about three hours from home. We packed for the trip with factor, snacks, tissues, and a pillow in the car.聽 Our plan was to take a dinner cruise on a paddleboat and watch the fireworks from the […]

Chocolate and Vanilla: Two Brothers鈥o Different

August 7, 2013

By Cazandra Campos-MacDonald One thing I鈥檝e learned is that right when I think I’ve got hemophilia all figured out, something comes along that blows my perception and understanding right out of the water.聽 I鈥檝e learned that you never know when your experience will ring true with someone else and make them feel less alone.聽 That […]

The Fighter

July 31, 2013

By Sonji Wilkes Several summers ago, I signed the kids up for swim lessons to help keep them busy during summer break. A couple of years later, after once-a-week, year-round lessons, they had progressed to a point where I was brave enough to sign them up for a local swim team.聽 I was thrilled; they […]

As I See Him

July 24, 2013

By: Emily Boyer It has been a long day; an immeasurably long day. We spent it at the Hemophilia Treatment Center (HTC) in an attempt to rid my little one鈥檚 body of a persistent inhibitor. It was long. I am tired. My house is a mess 鈥 I do not remember the last time my […]

Up, Up, and Away!!!

July 17, 2013

By Juanita Fish When my son was 9 years old, I begrudgingly sent him to camp for the first time. It was a pivotal moment for my family! When Johnathan (Jon) was born, I became the mother of a child that would need to be raised differently than others, at least physically. Eight months later, […]

Self Reliance To the 鈥淢ax鈥

July 10, 2013

By:聽 Maryann May I’ve been thinking a lot about Max and how he gained his hemophilia independence. 聽He was 6 the first time he self-infused. 聽He did it at our chapter鈥檚 family camp with the guidance of some amazing older mentors. 聽In those days things weren’t nearly as organized as they are now; no gaggle […]

The Red, White & Blue Of Hemophilia Independence

July 3, 2013

As we celebrate America鈥檚 Independence Day, nothing says it more than the wearing of red, white and blue, a parade and a night of fireworks. Self- infusion is Independence Day for kids with bleeding disorders.聽 They wear their medical alert bracelets, they go to camps, they practice – and sometimes struggle – with veins that […]

Adding More Mommy Friends to the Playgroup

June 26, 2013

When my oldest was first born, I was part of a weekly playgroup; a group of five to seven moms that would sit around a plate of cut-up vegetables and lemonade.聽 Through a fog of sleep deprivation, we exchanged stories of introducing our babies to solid food and comparing which brand of diapers worked best.聽 […]

Mommy, I Think You Might Need RICE for That

June 19, 2013

                I am notoriously klutzy. I always have been. My father used to joke that he should have named me “Grace” because I managed to spill a drink every Sunday at dinner. When I was a kid, I would walk into walls, and growing up in the South, […]

Superhero D.A.D: Delightfully Awesome Dude

June 12, 2013

On my husband鈥檚 Twitter profile, he describes himself as 鈥淔ather, Entrepreneur, Righteous Dude, Caped Crusader Fighting the Evil Private Health Insurance Empire.鈥澛 I鈥檇 testify those all true assessments of him.聽 He鈥檚 a pretty good guy. I think most fathers in the bleeding disorders community are.聽 They fight for justice for their kids just as hard […]

Your Choice. Your Voice.

June 5, 2013

  Hemophilia Treatment Centers (HTC’s) are federally-funded facilities that offer comprehensive, multi-disciplinary services in a single setting. I likened them to one stop shopping: you have your physician, nurse, social worker, and physical therapist all on the same team with you, the patient or caregiver, as the star athlete. Today, there are 144 federally-funded treatment […]

Prior Planning Prevents Persistent Problems

May 29, 2013

A couple of years ago, we decided on a whim to take a drive to the top of Pikes Peak on Labor Day weekend.聽 Standing at 14,115 feet, it鈥檚 one of Colorado鈥檚 highest mountain peaks and in July 1893, Katherine Lee Bates wrote the song “America the Beautiful鈥 after admiring the view from the summit.聽 […]

Taking Care of Me

May 22, 2013

Denial is a funny thing. There were several signs that indicated I needed to take some action about changing my habits and improving my overall health. 聽I chose to ignore most of those signs, giving myself excuse after excuse: I just don’t have time to exercise; there was a vegetable on my plate at dinner, […]

Taking Off the Super Woman Cape

May 15, 2013

Inspirational quotes appear in lots of different places in our lives: on social media, public service announcements, classroom posters, the bulletin board in the break room at work.聽 Prior to becoming a mom, I rarely gave them a second thought 鈥 they were simply filler and not something I spent much time pondering.聽 As I […]

Infusing Love: The Best Job You鈥檒l Never Get (Monetary) Payment For

May 12, 2013

Oprah Winfrey has been quoted, 鈥淚 always say moms have the toughest job in the world.鈥澛 Everybody knows Oprah is right more often than not. What would the job description for a mom with a child of a bleeding disorder look like?聽 I think maybe it would be something along these lines: Job Title: Mama […]

Honoring All Moms, Past & Present

May 8, 2013

Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]

I. Am. Exhausted. (…and Doing the Best I Can)

May 1, 2013

It’s one o’clock in the morning and I just finished infusing Thomas for the seventh time in twenty-eight hours. We spent four of those hours in the emergency room for pain management and I’ve heard, “Mommy!” approximately 635 times today. 聽I. Am. Exhausted. I had to keep Thomas home from school due to a nasty […]


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