'Time is not on our side - we want to share as many moments as possible with our daughter'
- The most common form of the disease, beginning either in childhood or adulthood, and it affects the brain, spinal cord and nervous system.- An extemely rare form of the disease affecting all nerve cells in the body, it causes siezures and brain damage. Usually beginning in infancy, the disease is life-threatening and life-limiting.Perinathal Lethal
While the family anxiously waited, Lacey had a horrifying 'episode that she turned completely blue', and was airlifted to Westmead Children's Hospital where she was diagnosed. The parents are devising a list of experiences they want to do with the baby before she passes away, which includes taking Lacey on her 'first trip to the beach'.
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