Hi family and friends,

It’s time to kick off our annual fundraiser in support of Austin and the bleeding disorder community. Each year, this fundraiser is a meaningful way for us to share Austin’s journey while helping raise awareness and support for families like ours who are navigating life with hemophilia. We continue to learn, grow, and adapt as Austin gets older, and we’re so grateful to have such a strong community alongside us.

It is hard to believe that Austin is now 5 years old and getting ready to start kindergarten this fall.  What a huge milestone! Austin has been lucky enough to be surrounded by many of the same teachers and kiddos since he was just 3 months old, so this transition to elementary school brings a mix of excitement and of course a few nerves. Despite the big change, Austin is looking forward to making new friends, riding the school bus, going to specials (especially gym class), and beginning this next chapter of his young life (thankfully with his big sister by his side). As parents, we’re also preparing for this big transition as we are faced with starting the process over with a new group of people who are unfamiliar with Austin and his hemophilia.  We are working closely with his new elementary school to set up special training for Austin’s teachers, admin team, the school nurse, the extended day staff, and other staff members in order to ensure that everyone feels confident and prepared to support Austin on this journey. Austin will be the first child with hemophilia that most of the staff, including the school nurse, have worked with, so education and preparation are key.

As parents, we have been striving to help Austin understand his hemophilia in an age-appropriate way and build the skills needed to advocate for himself, especially as he enters this new kindergarten chapter.  One of our proudest moments recently was overhearing Austin advocate for himself while playing with friends. When one of them suggested a game that involved jumping and landing on the ground on their bellies, Austin calmly explained, “I can’t land on my belly, I have to land on my feet because I have hemophilia.” Hearing him understand his body and speak up so confidently was incredibly powerful for us as parents.

Medically, Austin’s hemophilia continues to be well managed. He’s only had one accident this past year that required a trip to the ER. Thanks to his incredible care team at Boston Children’s Hospital and a dose of Factor VIII, Austin recovered quickly from his sprained ankle. Even with minimal injuries these first 5 years of Austin’s life, hemophilia is always at the front of our minds.  Living with hemophilia means there is a constant layer of awareness in everyday life.  Small bumps can sometimes lead to internal bleeding that is not immediately visible. We must think carefully about risks that other families may not have to consider.  Staying proactive with treatment, planning, and education helps to keep Austin safe, active, and able to just be a kid who enjoys all the activities a 5-year-old should enjoy.

This year marks our family’s 6th year participating in the Unite for Bleeding Disorders Walk in support of the New England Hemophilia Association (NEHA). NEHA plays a vital role in supporting individuals and families affected by bleeding disorders across New England. The funds raised go directly toward educational programs, family support services, financial assistance for medical and travel needs, community events, and advocacy efforts that help ensure access to quality care and treatment. They also provide resources for schools and healthcare providers, helping families like ours navigate everyday life more safely and confidently. Their work makes a real, tangible difference, not just for Austin, but for so many others in this community.

Walk day is truly one of our favorite days of the year, being surrounded by family and friends, all coming together to support Austin and the entire bleeding disorder community. Last year, our team surpassed our goal of $20,000 and raised an incredible $27,252, making us the third highest fundraising team for NEHA! Altogether, the NEHA community raised over $388,000 to support families like ours. We are so thankful. We couldn’t do this without the generosity and support of our family, friends, neighbors, coworkers, and even kind strangers.

This year’s walk will take place on September 26th in Canton, MA. Our team continues to grow each year, and we would absolutely love for even more of you to join us. It’s a fun, family-centered day with activities for kids and a chance to come together for a cause that means so much to us.

We walk to give back, to raise awareness, and to make sure other families who face this diagnosis have the same support and strength that we have found through NEHA.

Will you help us reach our fundraising goal? No amount is too little. It’s easy, just click “donate” to make a secure donation.

Thank you, as always, for your love and support. It truly means everything to our family.

Love,

The Rossoll Family