Description of Injury Event and Initial Treatment: CASK mutation related to mutation in X-chromosome. First study on CASK mutation was published in 2008 and Anna was born in 2009.
Where treatment took place: No medical treatment as such happened, except for consultation with dietician, physiotherapist, orthopaedist, paediatrician and genesis. The treatment was the program suggested by IAHP
What (if any) Specific Procedures Undertaken: Reading program and Physical program – swimming, trampolining, walking, cycling, running
How did this make you feel? Anna grows to be very happy child though stubborn at times but definitely having less tuning off moment than she used to have
How did this make you feel? Simple idea which was given to us by IAHP was that each brain injury is unique and you can’t really compare even similar cases as impact on complex mechanism as brain. It is better to compare the person before and after, in Anna’s case, mobility and general coordination improved dramatically. But her speech is still lagging behind, as neurologically she is like 2 year old which is a size of 8 years old
Other thoughts which you feel other survivors should hear about: It is lack of the information on how to stimulate and what to do with brain injuries, especially those related to children, like Dawn syndrome, Hyperactivity etc. So reading What to do with brain injured child book is such a great way to start which helps you to decide on your approach to the situation, as well as set expectation for yourself and your family.
What did ‘helpful help’ look like? And why do you feel it was helpful? Flexible work arrangement and possibility to work from home is a life saviour, thanks to my employer P&G. The rest is support from your family, resilience, managing the energy by eating right things ( corporate athlete book) and just believing that whatever happens is for the best as every cloud has a silver lining
What did ‘unhelpful help’ look like? Why do you think it was unhelpful? Just a lack of information as on the internet, none calls microcephaly a brain injury hence it took me so long to understand what can be done and what needs to be left to nature.