We would walk along the beach, go snorkelling with dolphins, saw iguanas crawling in the backyard - it was incredible as a young family] 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.
A cure will cost millions, but we'll never stop fighting When doctors told us our baby girl Tallulah Moon only had months to live, my husband Chris refused to wash her clothes.
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.
When doctors sat us down and told us she didn't have leukodystrophy, I breathed a sigh of relief.
She loves art, storytelling and dancing] They couldn't tell us much about SPG56, except that there was no cure.
