Ava and Lily's story

“The bravest journeys are never taken alone.”

 

Many young sisters share a close bond, but none closer than Ava and Lily, after Lily transformed the life of her baby sister, Ava.

Ava was born with a rare genetic condition called Mucopolysaccharidosis type 1 – or MPS 1. This disease affects many vital systems in the body, with the most devastating effect on the brain.

Ava’s parents, Alex and Lina, knew something wasn’t right in their baby girl, leading to a shock diagnosis of this disease that has no cure when she was just ten weeks old.

“We were absolutely devastated. It was like a bad nightmare,” Lina said.

Their care team under the Western Sydney Genetics Program at The Children’s Hospital at Westmead acted quickly, suggesting that an immediate bone marrow transplant from a suitable donor could halt the effects of this disease on her brain. With no time to source a donor outside the family, the chances of her parents and siblings being suitable donors were slim.

It was then that Ava’s ten-year-old sister, Lily, was identified as a suitable donor. She was admitted to the Hospital to have her bone marrow cells removed and then was well enough to go straight to Ava’s room to see them being directly transferred into her baby sister via an IV drip.

Although Ava still faces a lifetime of health issues relating to her condition, the bone marrow transplant has completely transformed her life for now. She is a bright and happy girl who loves cookies, Elmo, playing hide and seek and bopping along to her favourite music.

“Seeing Ava so well now, it’s amazing to think back to the doctors and nurses getting us through one day to the next, sometimes just hour by hour,” Lina said.

“I am so incredibly proud of both my brave girls.”