Little girl saves her sister’s life by donating bone marrow

  • Lily Thomas donated bone marrow to save her baby sister, Ava
  • Ava was diagnosed with  MPS 1 Hurler syndrome at five months old
  • The rare genetic condition meant she needed an urgent transplant
  • Since the surgery she has reached her milestones but still has a way to go 

Lauren Grounsell For Daily Mail Australia

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Lily Thomas was just nine years old when she saved her sister Ava’s life. 

Little Ava has MPS 1 Hurler syndrome, a rare genetic condition, and needed an urgent bone marrow transplant.

The girls appeared on Today Extra with their parents on Thursday, where their mother Lina described the transplant as a ‘miracle’.

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Lily Thomas donated her bone marrow to her sister Ava (pictured together) to save her life
Lily Thomas donated her bone marrow to her sister Ava (pictured together) to save her life

Lily Thomas donated her bone marrow to her sister Ava (pictured together) to save her life

Ava was diagnosed with MPS 1 Hurler syndrome, a rare genetic condition, when she was just five months old
Ava was diagnosed with MPS 1 Hurler syndrome, a rare genetic condition, when she was just five months old

Ava was diagnosed with MPS 1 Hurler syndrome, a rare genetic condition, when she was just five months old

People with the syndrome lack an essential enzyme, and before the transplant, Ava had enzyme replacement therapy
People with the syndrome lack an essential enzyme, and before the transplant, Ava had enzyme replacement therapy

People with the syndrome lack an essential enzyme, and before the transplant, Ava had enzyme replacement therapy

‘It was definitely a miracle,’ Mrs Thomas said. 

‘We just didn’t expect it, we tested all the kids – we got the two boys as well – and for Lily to be a match was just amazing.’

Ava was only five months old when she was diagnosed with MPS 1 Hurler syndrome.

People with the condition lack an enzyme that helps break down long chains of sugar molecules called glycosaminoglycans, according to Medline Plus.

Without the enzyme, glycosaminoglycans build up and damage organs, including the heart. 

The family appeared on Today Extra to share their story. Pictured is (left to right) Lina, Lily, Ava and Alex Thomas
The family appeared on Today Extra to share their story. Pictured is (left to right) Lina, Lily, Ava and Alex Thomas

The family appeared on Today Extra to share their story. Pictured is (left to right) Lina, Lily, Ava and Alex Thomas

Lily said she happy she was able to help her sister by donating bone marrow
Lily said she happy she was able to help her sister by donating bone marrow

Lily said she happy she was able to help her sister by donating bone marrow

Mrs Thomas said Ava was born premature and had whopping cough when she was four weeks old.

When she still was not thriving and doctors performed a metabolic urine test.

It was only then that they discovered she had the condition.

Ava was born premature and had whopping cough when she was four weeks old
Ava was born premature and had whopping cough when she was four weeks old

Ava was born premature and had whopping cough when she was four weeks old

She has reached her milestones, but still has a way to go with her skeletal issues
She has reached her milestones, but still has a way to go with her skeletal issues

She has reached her milestones, but still has a way to go with her skeletal issues

She underwent enzyme replacement therapy, before they were able to perform the bone marrow transplant.

‘I just was very happy I could help her,’ Lily said. 

The surgery has helped Ava to reach her milestones, but she still has some complications. 

‘She’s still got a fair bit to go with all the skeletal issues, but she’s doing well,’ Mrs Thomas said.  

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