Last Christmas, as other families were celebrating, Albion Park Rail parents Brooke and Tony Coe were praying for a miracle.
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Their daughter Lila was awaiting a bone marrow transplant due to a rare genetic condition called diamond black fan anaemia.
The condition – a failure of the bone marrow to produce red blood cells – had already seen her endure countless blood transfusions and surgeries to insert central lines.
Their hopes were pinned on the transfusion that was set for the new year –then on Christmas morning, the Coe’s woke to find Lila had pulled her central line out.
“Lila has had issues with venous access and multiple issues with her central lines including blood clots – and she needed this one to be in good working order for four weeks prior to the surgery,” Mrs Coe said.
“It had taken us so long to find a bone marrow match – neither my husband or I, Lila’s twin sister Evelynne or her three other siblings were a match. Through the bone marrow registry we’d finally found a match – a man in Poland – and we’d been so excited for the transfusion.
“We’d nearly lost her twice and this was our last option to save our baby. Then we found she’d pulled the line out.”
Another line was inserted, another date was set for the transfusion, but there was a further setback with an infection in the line.
However on February 14 – Valentine’s Day – Lila had her transplant. Now 21-months-old, she and her family face a wait of 100 days to ensure there’s no rejection, but signs of success are good.
“She has to spend six weeks or more in hospital, and then we’ll have to stay at Ronald McDonald house to be close to Sydney Children’s Hospital in Randwick, as a simple flu or temperature will see her rushed to emergency,” Mrs Coe said.
She said without the generosity of the Polish donor, their daughter may not be alive: “You don’t truly understand how important blood and organ donation is until your own child is sick”.
The family has also received support via the Illawarra Community Foundation, from the funds raised during last year’s i98FM Illawarra Convoy.
“This large family from Albion Park, the homeland of Convoy, really needed some support to cover their food and fuel costs,” said Convoy founder and i98FM breakfast host, Marty Haynes.
“We hope the food and fuel vouchers can assist the family throughout the next year and are proud to support families like the Coe’s.”
Funding information for families and individuals affected by potentially life-threatening medical conditions is at www.illawarraconvoy.com.au
The Coe family also have a online fundraiser at www.gofundme.com/little-miss-lila-grace