Just before her first birthday Sienna Horton lay in intensive care following a group of unexplained seizures. Parents Lisa and James Horton were told that the white matter in Sienna’s brain was disappearing due to leukodystrophy. They were informed that it was responsible for the breakdown of the nerves used for processing and cognition, and was progressive and untreatable.

At this stage, doctors could not predict how long Lisa and James would have with their little girl.

Lisa and James are now four years on with Sienna still by their side, however the day of the diagnosis is still a painful memory for them.

Mr Horton said that the doctors’ confidence has grown in the last 12 – 18 months following the new finding, and that they are hopeful Sienna will be able to continue learning and growing. “We just don’t know in what capacity and in what way” he said.

Sienna has been under the care of Director of Neurology, Associate Professor Andrew Kornberg, who has given the Horton family confidence in Sienna’s future. “The RCH isn’t just about having experts, qualified physicians and surgeons…It’s about people who understand the conditions and who can provide hope,” says Mr Horton.

Mr Horton expressed his gratitude to the planning, positivity and programs of the neurology department. The Horton family are also able to be linked to future myelin repair clinical trials through the department’s international collaborations.

Focus has now moved onto Sienna’s learning habits – she has started prep at a mainstream school this year and has recently learnt the process of reading.

Although she is yet to talk in sentences, Sienna is learning to use exaggerated facial expressions to convey different emotions. This repetitive process will allow Sienna to learn it and rechannel it through a different way in the brain.

“She’ll be behind the others, but I think in the long term she’ll be as capable and independent as you or me,” says Mr Horton.