Dressed head to toe in Hello Kitty, with a cheeky smile and a wave to hospital staff passing by, it’s hard to believe the challenges Haven has overcome to be sitting in a bed receiving her monthly blood transfusion.
At 12 months old, Haven woke up and couldn’t move her right arm or right leg. An emergency dash to the Queensland Children’s Hospital found Haven’s haemoglobin levels were critically low, starving her brain of oxygen and causing a stroke.
Haven was given an emergency blood transfusion, and an MRI confirmed she had suffered brain damage from the stroke.
Following a range of tests, Haven was diagnosed with Diamond-Blackfan anaemia – a rare blood disorder occurring in just seven out of every one million births. This disorder happens when bone marrow doesn’t make enough red blood cells.
Haven’s Mum, Kim, said the diagnosis came as a surprise, and navigating their family’s new normal hasn’t been without its challenges.
“We left the hospital with a new diagnosis of a rare disorder and were also managing the brain damage caused by Haven’s stroke,” Kim said.
“Haven had to re-learn how to do everything. We weren’t sure if she’d be able to move again, but the very next day she hi-fived me. She is definitely our little miracle.
“There has been a lot of rehab involved but Haven always manages to adapt, finding her own way to overcome challenges and get things done.”
Haven was also diagnosed with Cerebral Palsy and requires aides to help her walk as she fatigues quickly.
Now, 8-year-old Haven relies on the selflessness of strangers to stay alive, requiring blood transfusions every three to four weeks to replenish her haemoglobin levels.
An act of generosity that isn’t lost on her family.
“We are so grateful to everyone who donates blood. Their generosity gives us more time with Haven that we might not have had otherwise,” Kim said.
Precious time to spend with her three adoring sisters, learning through home schooling and living life to her fullest.
“No matter what we do, we find joy in the smallest things,” Kim said.
“On those hard days, there is still joy to be found. Waking up – that’s joy.
“I’ve even started noticing it in Haven, she’s always looking for that piece of happiness in each day and I think that’s really special,” she said.
Haven’s family continues to hope for a perfect match for a bone marrow transplant in the future. Until then, Haven continues to share her positive attitude and infectious energy with the Queensland Children’s Hospital team.