When doctors told us our baby girl Tallulah Moon only had months to live, my husband Chris refused to wash her clothes. He didn't want to lose her smell. The initial diagnosis was that she had a rare disease called leukodystrophy, which causes the white matter in the brain to deteriorate. Doctors said Tallulah Moon's was much thinner than it should have been, and nothing could be done.
![[Spastic Paraplegia Type 56 (SPG56) occurs in children usually between ages one and two, causing degeneration of the neurons, the nerve cells in the brain]](https://i.dailymail.co.uk/1s/2024/12/15/13/93024171-14138971-Spastic_Paraplegia_Type_56_SPG56_occurs_in_children_usually_betw-a-22_1734267938318.jpg)
Chris and I were devastated, but as we sobbed together we refused to accept our beautiful daughter would be gone so soon. In our desperation, we sought out other parents on Facebook with children in a similar situation. They recommended we start a genome sequencing process, to be 100 per cent sure we had the correct diagnosis.
![[Our life in Nicaragua, Central America. Our new home was filled with breathtaking rainforests filled with monkeys and wildlife. We would walk along the beach, go snorkelling with dolphins, saw iguanas crawling in the backyard - it was incredible as a young family]](https://i.dailymail.co.uk/1s/2024/12/15/13/93024181-14138971-Our_life_in_Nicaragua_Central_America_Our_new_home_was_filled_wi-a-20_1734267938269.jpg)
We had every gene in her body mapped, and at 14 months old, Tallulah was officially diagnosed with Hereditary Spastic Paraplegia Type 56 (SPG56) - an incurable brain disease so rare no one else in Australia has it. When doctors sat us down and told us she didn't have leukodystrophy, I breathed a sigh of relief. I knew they were wrong.
![[Today, Tallulah is wheelchair-bound and getting ready to start school next year. She loves art, storytelling and dancing]](https://i.dailymail.co.uk/1s/2024/12/15/13/93024189-14138971-Today_Tallulah_is_wheelchair_bound_and_getting_ready_to_start_sc-a-19_1734267938246.jpg)
They couldn't tell us much about SPG56, except that there was no cure. But the fact it wasn't leukodystrophy was a revelation to me - it meant there was hope and we had more time. That was the start of our mission to cure SPG56 with gene therapy. So began a hellish ordeal that would see our family abandon our idyllic rainforest life in Central America in a desperate bid to save her life.
![[Before: Doctors misdiagnosed her in early 2020 and said she had months to live. My husband refrained from washing her clothes because he didn't want to forget what she smelt like]](https://i.dailymail.co.uk/1s/2024/12/15/13/93024179-14138971-Before_Doctors_misdiagnosed_her_in_early_2020_and_said_she_had_m-a-17_1734267938222.jpg)
