Description: Jane has Sanfilippo Syndrome. Without treatment, Jane will not live to adulthood. You can help children like Jane by contributing to our campaign to raise funds for research into this childhood dementia.
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Jane has Sanfilippo Syndrome. Without treatment, Jane will not live to adulthood. You can help children like Jane by contributing to our campaign to raise funds for research into this childhood dementia.
Jane Kohne loves her litte sister Annika and her dog Alli. Infact, "Alli" was her very first word. She loves playing at her grandparents farm and adores Peppa Pig . However Jane's words have all but gone. Her abiilty to walk is being stolen by Sanfilippo and she is currently transitioning to a wheelchair. Sanfilippo has already taken so much from Jane but her family live in hope.
Jane was born early at 37 weeks. She spent 10 days in the special care nursery with respiratory problems. She was an unhappy baby and had constant ear infections. After already having had three kids, I knew she was different. I kept pushing and pushing but it wasn’t until she was nearly three that we got her Sanfilippo diagnosis.