Sam, mother to 7-year-old TJ, shared their story of TJ’s diagnosis with Type 2A von Willebrand disease (VWD) and his treatment journey – from a world that felt like raising a child in bubble wrap to prophylaxis (preventive treatment), independence and regaining a normal family life.
“At just 18 months old, our world changed forever.”
What began as a simple nosebleed quickly became life-threatening. TJ lost a significant amount of blood, went into cardiac arrest, and was airlifted to hospital, where he spent two weeks on life support. But even after that, the bleeds continued. They were frequent, heavy and unpredictable.
Emergency department visits became routine, sometimes several times a week. Each episode meant urgent treatment with clotting factor and tranexamic acid. He was only a toddler, yet life revolved around hospital corridors, IV lines, and constant vigilance. We were told to avoid sports, avoid rough play, never be far from a hospital. Camping felt impossible. Spontaneity disappeared.
It felt like raising a child in bubble wrap.
When we moved to Australia, we carried a folder of medical paperwork everywhere. Within two weeks, another severe nosebleed sent us back to the emergency department. That’s when a doctor said words we’ll never forget: ‘This can’t be a lifestyle’.
For the first time, someone looked beyond managing bleeds and focused on preventing them. We were referred to a specialist Haematology team, and after further testing, a formal diagnosis of Type 2A von Willebrand Disease was confirmed. By then, school attendance had already been heavily affected.
The team suggested something that changed everything: prophylaxis.
A PICC line was placed, and regular preventive infusions were started three times a week. The transformation was immediate. From the day prophylaxis started, the hospital admissions stopped.
Soon after, we transitioned to a port with twice-weekly infusions. With the support of an incredible outreach nursing team, we learned to access and de-access the port at home. It was confronting at first. There were tears, and moments we questioned whether we could keep going.
Holding your child still to insert a needle is something no parent imagines.
Then one day, TJ simply said, “It’s okay. Let’s do it.” And something shifted. Confidence replaced fear. Routine replaced crisis.
Since starting port-based prophylaxis, there have been no hospital admissions for bleeding and no missed school days due to his condition. Travel is possible with preparation. Sport is not only allowed, it’s encouraged.
We were once told he would never safely participate in sports or be far from medical care.
Today, he is progressing through karate belts, loves swimming, and lives with strength and confidence. Camping trips are back on the table. Visiting family overseas is manageable. Life is no longer dictated by the nearest emergency department.
Even challenges like losing baby teeth, once a major concern, are now handled with a clear plan. What once meant panic and hospitalisation now means preparation and control.
At just seven years old, he understands his condition remarkably well. He can explain it to teachers. He knows when to speak up. Instead of being defined by a bleeding disorder, he is defined by resilience.
Prophylaxis and port access did more than prevent bleeds. They gave our child freedom. They gave him consistency in education. They gave him independence. They gave us back normal family life.
For families still living in reactive mode, racing from bleed to bleed, we share this story to show that another path may be possible. Preventative treatment isn’t just about medical outcomes; it’s about quality of life.
We will always be grateful to the medical teams who looked beyond survival and helped us build a future.
Because managing a bleeding disorder shouldn’t mean limiting a childhood.
