Meet Tyler, a healthy three-and-a-half-year-old boy who loves to play T-ball, stick his tongue out, and make funny faces. On the outside, he's just like every other mile-a-minute youngster on the playground. On the inside, Tyler is special: He was born with hemophilia B.

According to his dad, "Tyler is three and a half years old—a healthy young boy. He was born with hemophilia B. He is factor-IX-deficient. He is severe, and makes less than 1% of factor IX." Tyler's mom remembers the difficulty of learning that Tyler had hemophilia B: "The reason we knew something was wrong was after his circumcision, it kept bleeding. It took them a couple days to even think about a bleeding disorder, since there wasn't anything in the family. So the waiting to know what was going on, what was wrong, was difficult."

In the Beginning
Tyler's mom takes a moment to look back: "It was a shock. He's the first in the family to have hemophilia. A lot of people told us to enjoy our baby, that it's the honeymoon period, that not many bleeds happen in the first year. Unfortunately, I don't think I took that advice, but I would give that advice to somebody else. It's difficult. You kind of jump ahead of yourself. What about when they learn to walk, this, that, the other?"

The Power of Prevention
When Tyler was 21 months old, his parents and his doctor decided to put in an implantable infusion port to make it simpler for Tyler to go on preventive treatment. Today, many people manage hemophilia using prevention as well as "on-demand" treatment.

Tyler's mom says, "He hadn't had any joint bleeds or any serious bleeds up to that point, and we really wanted to start preventive therapy before he had any joint bleeds, to prevent any damage. The summer before, he had one serious bleed in a thigh, in the hip muscle area. That was a real eye-opener. So we were kind of rushing into it soon after that. We were ready."

Tyler's dad remembers talking to other parents: "Other families were telling us, 'This is what's going to happen. This is going to relieve some stress and anxiety within the household after he gets his port in and you get on a ... regimen. It's going to make you feel better.' And we kind of thought, 'Yeah, that sounds right.' And it really happened!"

Taking Big Steps
Since starting his preventive therapy, Tyler's family has moved to a new level of normalcy. His mother notices the improvement: "There was a big difference. If Tyler was in some play group and I would go over, and he would fall on a toy, my heart would stop. Anybody else's kid, they wouldn't even notice that. But now ... I'm less cautious than some of the other moms. Tyler goes to nursery school two mornings a week, just two and a half hours a day. This is something that we hadn't thought of before.... We figured we'd wait till kindergarten, but once we had that comfort level, I think I was the first to sign him up."

"It was pretty liberating, because he goes Wednesdays and Fridays. We infuse Tuesdays and Fridays, so he's pretty well covered. I went in and did a presentation for the teachers and found myself really kind of downplaying it much more than I thought I would. I thought I'd say, 'Call me if he bumps his knee!' and 'Call me if he bumps his head!' But they had a little fear at first, so I found myself trying to relax them and making sure they would treat him normally."

What Does Tyler Think?
His mom says, "I don't think he really thinks about it at this point. Obviously, he's aware. He gets infusions twice a week. It used to be more difficult to brush his teeth than to give him an infusion. It's really the sitting still part that was hard for him. But now, it's so routine to him. He gets up in his chair and watches some TV and doesn't even really act up at all about it."

Tyler's dad notices, "And now he wants to do everything. And he can do everything as long as he's watched. You know, he won't be climbing on monkey bars." "No, luckily he is somewhat cautious," says Tyler's mom. "When he falls, he kind of makes a face and says, 'I'm fine, I'm fine, I'm fine,' whether you overreact or not. And hemophilia has already taught him to be more compassionate and really kind of a caring person."

A Word to Parents
Even though Tyler's childhood is far from over, his parents have learned a great deal from it, and they're ready to share with other families of children with hemophilia.

Advises Tyler's dad, "The first piece of advice I would give is to make contacts in your hemophilia community. I think the most important part is, ask somebody who's in your community to put you in contact with another family who has a child with hemophilia. I don't care if they're in the next state; you need to sit down with them as soon as possible."

Indication
BeneFIX is indicated for the control and prevention of hemorrhagic episodes in patients with hemophilia B (congenital factor IX deficiency or Christmas disease), including control and prevention of bleeding in surgical settings. BeneFIX is not indicated for the treatment of other factor deficiencies (eg, factors II, VII, VIII and X) nor the treatment of hemophilia A patients with inhibitors to factor VIII, nor the reversal of coumarin-induced anticoagulation, nor the treatment of bleeding due to low levels of liver-dependent coagulation factors.

Important Safety Information

	•	As with the intravenous administration of any protein product, common adverse reactions may include headache, fever, chills, flushing, nausea, vomiting, or tiredness.
	•	BeneFIX may be contraindicated in patients with a known history of hypersensitivity to hamster protein.
	•	Allergic-type hypersensitivity reactions, including anaphylaxis, have been reported for all factor IX products. Patients should be informed of the early symptoms and signs of hypersensitivity reactions. Patients should discontinue use of the product and contact their health care provider immediately and/or seek emergency care if any hypersensitivity reactions occur.

Please see BeneFIX Prescribing Information

The health information contained herein is provided for educational purposes only and is not meant to replace personal discussions between health care providers and patients. All decisions about patient care must be made with a health care provider who can assess the special needs of each individual patient.

For more information, talk to your doctor and see the Product Information for BeneFIX.

For a look at how a college student deals with hemophilia, see Matt's story.