Back to America!

Please help us send Vivie and her family (Natalie, Eduardo and Grazi) to a specialised intensive therapy program at the Neuromotor Research Clinic part of the Fralin Biomedical Research Institute at Virginia Tech in Virginia, USA.

 

Vivie, aged seven, was diagnosed at the age of one with a very rare disease. She is one of only around 250+ people in the world with a CASK gene mutation and microcephaly.

Vivie's condition is so rare that it does not even have a proper name. When she was diagnosed, Vivie's family were told most children do not walk or talk, and she may have significant medical issues. Due to the rarity of this disease, very little information is given to parents nor is there significant funding for research, although a number of CASK foundations are working hard, raising much needed funds for research to hopefully find a cure.

The CASK gene has an important role in brain function, therefore if someone has a CASK gene mutation, their brain does not function in the same way. Recent research has shown that it may be neurodegenerative, although there is hope that this may not be the case for every person.

 

It has been a difficult few years for Vivie's family, accepting and understanding what this means for Vivie and many hours of therapy and providing her with the love and support she needs. Vivie has significant developmental delays and struggles with daily tasks. There is no cure for CASK gene mutations.

 

With no specific cure available, one amazing program that has seen promising results for CASK children is a four week intensive therapy program at the Neuromotor Research Clinic (NRC), VT. It appears to be the only program in the world that multiple CASK children have attended, using a unique approach and protocol that is not offered in Australia. Staff at the Clinic actually have an understanding of what type of therapy best suits CASK children based on how CASK affects their brain, and therapy is tailored to an individual’s needs with a recent paper from NRC validating this intensive therapy program for CASK children. Therapy is conducted in a home setting and provides gains in real life, functional skills.

 

Vivie has attended the program before and significant gains have been made to Vivie’s development. These gains have changed the trajectory of Vivie’s life, including being able to communicate, learn self-care skills, begin to recognise letters and numbers and functional gains for the home and community.

Vivie's family would love to attend this program in August 2025 to provide her with the best possible opportunity to learn new skills and progress her development, although it comes at a great financial cost.

Small gains go a long way for a child with developmental delays. Never let a diagnosis define your child, your child will define themselves.

With your help, Vivie will continue to defy the odds and define her path in life. Funds will be used for Vivie's family to travel and live in Virginia and importantly, the cost of the four week therapy program. Vivie is a ray of sunshine in everyone's lives; a positive, happy child who deserves

the opportunity to become the best version of herself. 

Thank you.

Connect with us on Instagram @vivieheadstoamerica

PLEASE NOTE THAT ALL DONATIONS ARE IN AUSTRALIAN DOLLARS. THANK YOU!