IF Miller Townsend is not allowed to watch The Wiggles he will throw himself dramatically to the ground, a time-tested move familiar to anyone who has spent time with toddlers.
It is in these everyday moments that Miller’s mum, Rachel Townsend, can for a brief minute forget all that the tiny 19-month-old has been through.
Miller was born with Diamond-Blackfan Anemia (DBA), a rare disorder where bone marrow fails to produce enough red blood cells. He has blood transfusions every three weeks to increase his haemoglobin levels, a practice likely to continue for the rest of his life.
Miller was diagnosed with DBA at six weeks old after he stopped feeding and became pale.
Since then, he has had regular blood transfusions and is on daily medication to counteract the iron overload the life-saving treatments causes.
But the challenges have not held the spirited Fern Bay toddler back. “He’s pretty resilient to everything, he doesn’t know any different,” Mrs Townsend said. “He’s just like any other 19-month old baby, he’s a terror and into everything.
“You sort of forget what he’s going through.”
With estimates of between five and 10 cases of DBA per every million births worldwide, the condition is not widely known.
But Mrs Townsend and her husband Matthew are on a mission to change that by raising awareness of DBA, and of the importance of regularly donating blood.
“If Miller didn’t have blood, he wouldn’t be here,” Mrs Townsend said. “You don’t really know how important it is until you have been affected.”
Miller’s day care, Play, Learn and Grow at Mayfield, recently held a charity ball to raise money for research into rare blood disorders. One of the guests at that ball was Greg Taylor, the president of the Waratahs Rugby Club.
Mr Taylor was so moved by Miller’s story that the club is hosting a charity day on Saturday in the toddler’s honour.
“We think it’s a really great cause – to support the family, raise awareness and put some funding into research into DBA,” Mr Taylor said.
The club will donate $1000 to the cause itself, as well as collect donations at the gate today. Mr Taylor urged people to get to the rugby ground at Waratah Oval around 1.30pm ahead of the women’s kick off against the Wanderers. The men will then go up against the Griffins at 3pm.
Mrs Townsend said all money raised will be donated to the Captain Courageous Foundation, which conducts research into rare blood disorders and is planning a clinical trial in 2019.
In the meantime, Miller and his older brother Mack, 4, keep doing what children do best.
“They’re crazy,” Mrs Townsend said. “Miller is a smaller in stature which is a side effect of what he’s got, but other than that, he’s just a normal little boy.”
For information visit ‘Miller Ray With DBA’ on Facebook.