Leaving the Sidelines: How One Family Redefined Their Life with Hemophilia A

When Allison Sandford-Sweatman’s then four-year-old son Griffin was accidentally kicked in the leg by another player, she felt she had no choice but to pull him out of soccer. As a mom to a child with hemophilia, stepping away from sports seemed to be the only way to keep him protected from a life-threatening bleed.

Griffin has the most common type of hemophilia, hemophilia A, which is a rare disorder that prevents blood from properly clotting due to a missing or defective protein called factor VIII. For people with hemophilia, sprains and bumps that would be minor injuries for most can result in long-term health issues and internal bleeding – which is what happened to Griffin.

“It turned out he’d been running around for five days with a bleed in his leg and I didn’t know,” Allison recalled.

Hemophilia affects everyone differently, just like many other medical conditions. For Griffin, his condition is severe and can cause life-threatening internal bleeding even in the absence of an inciting injury.

At the time, Griffin’s doctors recommended he start preventive intravenous (IV) therapy twice a week to help protect him from serious bleeds. For his family, who enjoyed traveling abroad, spending summers at the beach, and maintaining a busy lifestyle, activities became quite restricted as they adapted their lives around Griffin’s IV treatments.

For Allison, it was all-consuming. “You’re always ‘on’ when you have a child with a chronic illness and hemophilia, and the need for frequent treatment can add to that burden.”

For many years, Allison and Griffin continued their lives with treatment becoming part of their routine and cautiously exploring activities that interested Griffin while ensuring to keep him out of harm’s way. Soon after Griffin turned seven years old, his doctor told Allison about Hemlibra® (emicizumab-kxwh)*, a prescription medicine used to prevent or reduce the frequency of bleeding episodes in adults and children with hemophilia A. It is the first medicine for hemophilia A that can be subcutaneously injected, like a shot under the skin, similar to the way someone with diabetes injects insulin. Because Hemlibra has a unique four-week half-life (the length of time it takes for half the amount of a medicine to leave the body), the medicine sustains longer in the body between doses, enabling patients to self-administer once a week, every two weeks, or every four weeks, after an initial four-week loading dose.

*What is the most important information I should know about Hemlibra? Hemlibra increases the potential for your blood to clot. Discontinue prophylactic use of bypassing agents the day before starting Hemlibra prophylaxis. Carefully follow your healthcare provider’s instructions regarding when to use an on-demand bypassing agent, and the dose and schedule you should use. Hemlibra may cause serious side effects when used with aPCC (FEIBA®), including thrombotic microangiopathy (TMA) and blood clots (thrombotic events). If aPCC (FEIBA®) is needed, talk to your healthcare provider in case you feel you need more than 100 U/kg of aPCC (FEIBA®) total. See more safety information below.

For the past six years, Allison and Griffin have seen the benefits of this treatment option, providing flexibility and allowing him to continue to participate in activities he loves. Throughout their journey with hemophilia, Allison has consulted with his doctor to make sure he can safely participate in activities and ensure they are taking all the necessary precautions.

Nearly a decade after that initial kick, Griffin is back on the soccer field, with Allison on the sidelines with a cooler stocked with ice packs and his emergency bleed medicine just in case. He is also playing on a basketball team, participating in his school musical, and running around with his active group of friends. The administration of Hemlibra, which Griffin takes once every two weeks, has allowed his family to integrate treatment into their busy schedule. The family can now travel with less disruption – Griffin has even been overseas to visit relatives in England twice, and they will be back on the beach this summer.

“I like to say hemophilia is a part of Griffin’s life but it doesn’t control everything about him. We have a box with his medical supplies in his closet and it only comes out every two weeks,” Allison said.

*In the Phase III HAVEN 3 study in people aged 12 years and older without factor VIII inhibitors, the average number of treated bleeds per year (ABR, annualized bleed rate) for people receiving Hemlibra prophylaxis every week (N=36) or every two weeks (N=35) was 1.5 (95% CI: 0.9, 2.5) and 1.3 (95% CI: 0.8, 2.3), respectively, compared to 38.2 (95% CI: 22.9, 63.8) for people receiving no prophylaxis (N=18). The median time on Hemlibra for people in HAVEN 3 study was 30 weeks (once every week), 31 weeks (once every 2 weeks), and 24 weeks (no prophylaxis). In the Phase III HAVEN 4 study, the ABR for people aged 12 years or older with hemophilia A with or without factor VIII inhibitors receiving Hemlibra prophylaxis every four weeks (N=41) was 2.4 (95% CI: 1.4, 4.3). The median time on Hemlibra for people in HAVEN 4 study was 26 weeks.

As a parent, Allison said her goal was to make sure Griffin did not feel defined by his medical condition. She enjoys watching him from the sidelines and feels proud seeing him pursue his interests.

The family is still cautious, but Allison notes, “there is very little that Griffin thinks he can’t do.” As a mom, Allison had to get creative with how to help Griffin be a kid – to play and explore the world, while balancing precaution, medical appointments and treatment. “I don’t want him to feel like he has to live in a bubble, but his safety is always on my mind.”

Countless mothers have walked a similar path, facing the challenges of caring for a child with hemophilia A and showing extraordinary strength and resilience along the way. Their heartfelt stories come to life in this beautiful new short film.

Every person’s hemophilia A journey is different, and Griffin’s physical practices may not be appropriate for everyone.

Important Safety Information

What is HEMLIBRA?

HEMLIBRA is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with hemophilia A with or without factor VIII inhibitors.

What is the most important information to know about Hemlibra?

Hemlibra increases the potential for blood to clot. People who use activated prothrombin complex concentrate (aPCC; Feiba®) to treat breakthrough bleeds while taking Hemlibra may be at risk of serious side effects related to blood clots.

These serious side effects include: 

•Thrombotic microangiopathy (TMA), a condition involving blood clots and injury to small blood  vessels that may cause harm to your kidneys, brain, and other organs 

•Blood clots (thrombotic events), which may form in blood vessels in your arm, leg, lung, or head  

Patients should talk to their doctor about the signs and symptoms of these serious side effects, which can include:

If patients experience any of these symptoms during or after treatment with Hemlibra, they should get medical help right away.

Patients should carefully follow their healthcare provider’s instructions regarding when to use an on demand bypassing agent or factor VIII, and the dose and schedule to use for breakthrough bleed treatment. If aPCC (Feiba®) is needed, patients should talk to their healthcare provider in case they feel they need more than 100 U/kg of aPCC (Feiba®) total.

Patients’ bodies may make antibodies against Hemlibra, which may stop Hemlibra from working properly. Patients should contact their healthcare provider immediately if they notice that Hemlibra has stopped working for them (e.g., an increase in bleeds).

The most common side effects of Hemlibra include: injection site reactions (redness, tenderness, warmth, or itching at the site of injection), headache, and joint pain. These are not all of the possible side effects of Hemlibra. Patients can speak with their healthcare provider for more information.

What else should patients know about Hemlibra?

Patients should see the detailed “Instructions for Use” that comes with Hemlibra for information on how to prepare and inject a dose of Hemlibra, and how to properly throw away (dispose of) used needles and syringes.

Hemlibra may interfere with laboratory tests that measure how well your blood is clotting and create an inaccurate result. Speak with your healthcare provider about how this may affect your care. 

Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Only use Hemlibra for the condition it was prescribed. Do not give Hemlibra to other people, even if they have the same symptoms that you have. It may harm them.

Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, or herbal supplements. Keep a list of them to show your healthcare provider and pharmacist.

Before using Hemlibra, tell your healthcare provider about all of your medical conditions, including if you are pregnant, plan to become pregnant, are breastfeeding, or plan to breastfeed.

Since Hemlibra was tested in males, there is no information on whether Hemlibra may impact your unborn baby or breast milk. Females who are able to become pregnant should use birth control during treatment.

Please see Important Safety Information, including Serious Side Effects, as well as the Hemlibra full Prescribing Information and Medication Guide.

M-US-00026996(v1.0) 5/25

© 2025 Genentech USA, Inc. All rights reserved.

This is a paid partnership between Genentech and SheKnows.