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Our Cask Heroes


Tristian Kali Ziegler

This is Tristian Kali Ziegler, he was born a twin on March 9 2020. He passed on May 15 2020. His body was donated to Professor Mukherjee so as to facilitate the advancement of medical research for children like Tristian.

Tristian is very much loved and was able to touch the souls of many.


This is Albert from North Carolina . He was diagnosed with a cask gene mutation in June 2021 and passed away on 27 February 2022 at the age of 1. RIP Albert John Hemphill 5th.


This is Haillie and I am Albert’s sister . Albert went to heaven on 27 February 2022. I am also a CASK hero.


Mia is 10 years old and lives in Paris France. Mia is one of four children who has been diagnosed with the Cask disorder who is living in France.


Sarah is 3 years old and lives in Hampshire, England.


Audrey is 8 years old and lives in New York , USA.


Vivie is 5 years old and lives in Sydney, Australia


Audrey is 6 years old and lives in California , USA. She is working on independent walking and using her AAC device to help communicate. She works SO hard every single day and is her mummy & Daddy’s Sunshine.


Andrea was 21 years of age when angels took her to heaven on 21 December 2021. Andrea was diagnosed with the CASK Gene Mutation within days of going to heaven. She loved camping and Walt Disney World and touched the lives of those around her with her beautiful heart and kindness. She is missed so much but will never be forgotten. 



Em is 2 and lives in Sydney. Em is trying to learn to walk.

“In some ways, that CASK-linked pathology is degenerative in nature provides a positive outlook. Because microcephaly in CASK-linked pathology progresses postnatally, there may be a temporal window when therapeutic intervention might prevent or slow further brain cell loss. Regression, even in adolescence, has also been observed in some cases of MICPCH [119], again offering the tantalizing possibility that a therapeutic approach might prevent such decline under conditions when degeneration is known to progressThe potential benefits of intervention might extend even further given that non-cell-autonomous toxicity could also affect functioning of the remaining neurons; reduction of such toxicity, especially when coupled with high-intensity rehabilitative measures [120], might offer real hope for a positive impact on functional outcomes.”