How blood donations are helping three-year-old with rare disorder play like a 'normal kid'

Three-year-old Lauren Zeller has a one-in-a-million bleeding disorder but she's able to run, jump and tumble like other little girls thanks to the kindness of strangers.

Lauren was diagnosed just before her first birthday with a rare and severe form of von Willebrand's disease — type 2B — which impairs blood clotting.

As a baby, she bruised easily and ended up at the Queensland Children's Hospital emergency department when she started teething, after the bleeding continued for hours.

Every six to eight weeks the typical bumps of childhood turned into something more serious, requiring visits to the hospital for blood treatments.

Earlier this year, she had surgery to insert a port-a-catheter into a vein in her chest, allowing her parents Clare and Rob Zeller to give her a blood product at home three times a week, reducing the need to take her to emergency.

The product, known as Biostate, contains two proteins essential for blood clotting — human coagulation factor 8 and human von Willebrand factor.

"I don't really want to think about what would happen if we didn't have the blood products," Lauren's mum said.

"They are life saving for her. If you can't stop the bruising, or the bleeding underneath there, then that would be quite disastrous for her."

One dose of the blood product contains proteins collected from the plasma of up to 50 donors.

Despite Lauren's illness, the Zellers have worked hard to allow their daughter to run around like a "normal kid", engaging in rough and tumble with her brothers Harry, 8, and James, 6.

But being able to give her the blood product regularly at home, has relieved their stress around their daughter having a fall.

"We were the helicopter parents standing ready to catch her as soon as she fell, but we can kind of take a step back now and let her have her freedom to explore," Clare said.

"We can give her the freedom to become who she wants to be, running around exploring the world without having to chase behind her with hands ready to catch her so she doesn't hurt herself and fall.

The Zellers are more aware of the dangers of having a bleeding disorder than most parents — Clare is an emergency specialist, and Rob is a surgical assistant in orthopaedics.

But that hasn't spared them from the challenges of dealing with their own child's significant illness.

"It's still quite confronting," Rob admitted.

He described one of Lauren's early falls, which resulted in blood coming out of both her ears, as "quite scary", even for a trained doctor.

Challenging the paradigm

Queensland Children's Hospital haematologist Sally Campbell said teaching parents to give blood products at home was a "really steep learning curve at the start".

"It can be a very daunting thing for families to take on," Dr Campbell said.

"Our multi-disciplinary team supports families through the learning process, helping them build the skills and confidence to manage treatment at home.

"If an access doesn't go to plan, support is always available."

Dr Campbell said a key part of her job was to prevent her patients' bleeding disorders from interfering with their lives as much as possible.

"Historically, bleeding disorder centres typically told children and young adults not to play contact sports, but I think as our treatments get better, that paradigm is being challenged," she said.

"It used to be: 'no you can't do that,' but now we are saying 'how can we do this safely, together?'

"I really encourage the families to tell me what's important to them on a family level. I think there's a lot of inadvertent harm that you can do by restricting things too much."

Dr Campbell said pharmaceutical companies were working on new drugs that would allow patients with von Willebrand's disease to inject them into the fatty tissue — like the way people with diabetes deliver insulin — rather than relying on a port-a-catheter.

She said although von Willebrand's disease occurred in about one in 1000 people, the prevalence of the type 2b form Lauren had been diagnosed with was estimated at one in a million.

Although she is only three, Lauren is slowly getting used to having to have regular blood products delivered at home.

"I am brave," she said recently as her dad administered a dose.

Moving forward, the Zellers are grateful to more than 600,000 Australian blood and plasma donors for giving Lauren, and other children like her, the chance to live their best lives.

It means Lauren can concentrate on being her "confident and chatty" self, rather than worrying about her bleeding disorder.

"Her laugh and smile is certainly infectious and probably the best thing about her," her proud dad said, when asked what made her one in a million.

"She's full of beans and absolutely developing a whole lot of sass."

This week is National Blood Donor Week.

To book a donation, call 13 14 95, visit lifeblood.com.au or download the Lifeblood app.