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Poppy’s Bravery Against Sandhoff

Little Poppy seemed to be a happy, healthy little girl. From the day she was born, you would have never thought she would have this awful condition starting to form in her brain.

Just before she turned one we noticed her development starting to slow down, and she was beginning to go backward with what she was able to do. She was no longer able to sit up properly on her own, so we took her to our paediatrician and got numerous tests done as well as an MRI. At 14 months old Poppy was diagnosed with a rare genetic disease called Sandhoff. It is about 1 in 500,000 patients who are diagnosed with this condition, and not many in Australia.

This disease progressively destroys nerve cells in the brain and the spinal cord, meaning Poppy will never be able to walk or talk. She has numerous seizures a day, and over time she will become blind, lose her hearing and become paralysed.

Children with infantile Sandhoff only live to be 3-5 years of age, there is no cure for Sandhoff disease and Poppy is nearly three!

For most of 2020 Poppy was in and out of the hospital due to pneumonia and a constant cluster of seizures, but to this day she still fights this cruel condition with such strength, courage, and bravery. Poppy is still such a happy and very cheeky little girl and we’re so blessed to be able to continue making many beautiful memories with her. She is our little warrior.

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