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Our Cask Heroes

Cask disorder

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.
CASK Gene Mutation


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


Audrey is 8 years old and lives in New York , USA.
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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.
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Ivy is a 3 year old happy girl. We got her diagnosis when she was 8 months old of deleted chromosome at Xp11.4. She has been working hard at different types of therapy, including physiotherapy, occupational therapy and speech therapy. Ivy has done a year of the Anat Baniel Method Neuromovement. Now She is also doing Therapeutic horse back riding, and she has started the Therasuit method as well. We are hopeful that this will be her year to walk! We were unsure what life would look like for our baby girl but she shows us all the time how strong and happy she is!


Andrea was 21 years of age when angels took her to heaven on 20 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.