CAN YOU HELP ISAAC ON HIS JOURNEY

Isaac is 5yrs old. He is a happy, cheerful, curious little boy determined to make the best of every learning opportunity.

Unfortunately Isaac was born with a very rare neurodevelopmental syndrome called “Okur-Chung Syndrome”

There are currently only 120 cases diagnosed worldwide with only two children identified in Ireland.

Isaac is affected in the following way:

Global developmental delay, epilepsy, visual & hearing difficulties, microcephaly, hypotonia, heart complications, low immune system functioning, frequent respiratory infections and poor sleep pattern.

Isaac has a PEG (tube inserted into his tummy) in place to ensure that he gets the food and fluids that he needs. Isaac needs support to carry out simple everyday life skills like washing and dressing.

Isaac needs support on his life journey.

We are setting up a Go Fund Me page to help us to realise our hope of getting Isaac to the USA so that he can participate in a clinical trial. He has already been accepted but the associated costs are beyond our means.

This trial, we hope, will provide better insight into the condition and how best it can be treated. This will provide vital information for Isaac’s development and care, as well as for other children who are affected by this condition.

As parents we want only the best for Isaac and we are grateful to be in a country where the team working with us provide so much help and support. However, there is so little known about this condition we are desperately exploring all avenues to provide help to Isaac now and in his future years. Right now our best hope is to get him to this clinical trial.

We appreciate any donations big or small and would be very grateful if you would share this appeal widely with your friends and on social media.

All funds raised will go towards the expenses associated with getting Isaac to the clinical trial. Any surplus monies raised will be donated onwards to other similar children’s charities.

More information about Okur-Chung Syndrome can be found at,

https://www.csnk2a1foundation.org/

Isaac lives in Gort town Co Galway.