Jack O Donavan

Sensory room for Jack! 

This Go fund me page is for my nephew Jack O Donnovan from County Cork, Ireland. Thank you for reading Jacks story of how living with a Chromosone disorder has affected him.

Jack was born with mosaic 18q21.1 deletion syndrome. His break point of 21.1 includes the TCF4 Gene in turn giving him a diagnosis of Pitt Hopkins syndrome. Jack is now 4 years but his intellectual ability functions at a 6 to 9-month level.

He has severe profound intellectual disability. He is non verbal and a result cannot express with words when he is in pain. Jack is fed through a tube in his tummy. He was also born with a cleft palate, has difficulties with his sight, has had several surgeries and was recently diagnosed with epilepsy. His seizures are gradually increasing.

Jack needs constant supervision and is facing struggles that no child should have to face, but his smile never wanes. He reaches inch stones instead of milestones!

He is an exceptionally happy little boy and anyone who gets to spend time with Jack should count themselves lucky. He is blessed with an older brother Ryan who has high functioning autism. I think we all agree Jack is a very handsome little boy.

Both his mam and dad have to continually fight the authorities tooth and nail for the small bit of support they are entitled to and that is after a day of medications, feeding tubes, seizures, hypos, routines and 24 hour care!

Jacks parents would love to adapt their living arrangements to incorporate a sensory room for him and he also needs a specially adapted car seat. Funds raised will go a long way to helping this dream come through.

Please share Jacks story on social media and we would be delighted to answer any questions you may have!