Our story “Mum showed me how strong I am”

Doctors said Tabitha Ellem wouldn't live past 10, but at 24 she’s now working towards the Paralympics. She and her mother, Sonia, share their story.

- GENEVIEVE GANNON.

Sonia: Tabitha was my third child. She was a surprise! She was born a month early, but apparently healthy. She seemed a bit different than the other two, but we carried on with life. When she was still little, she began screaming in the middle of the night. It was a really high-pitched scream. The only way to soothe her was to walk her up and down the street, out in the Canberra winters in the dark.

When we went to the doctor for her immunisations, he noticed she had a very big head, and she was diagnosed with hydrocephalus. She had an operation to put a shunt in, but afterwards I got the impression the neurosurgeon thought there was something else. He told us to go see a paediatrician. At her 12-month checkup, her paediatrician thought she was fine. But when we took her back at 18 months, she hadn’t grown. That was when we met with the genetics team from Sydney.

We learned Tabitha had a condition called Hurler Syndrome. The specialists told us that she wouldn’t live beyond 10 years. There was this option of a bone-marrow transplant, but they warned it probably wouldn’t be a very good outcome with that either. I cried a lot after that meeting.

There was not a lot of literature around. It was the days before the internet took off. It was very hard not knowing. Eventually, Tabitha had a cord blood transplant. There was a 30 per cent chance she wouldn’t survive, but she did exceptionally well. She’s always been determined. It was tough, though.

The uncertainty of the future was really hard, especially with it being such a rare disorder. You’re very alone and very lonely. I’d be doing school runs and I’d be crying.

I was lucky to have support in my family and friends, and my husband, Gerry. We decided to take every day as it came and stop thinking about what