Who are AHCI?

Alternating Hemiplegia of Childhood Ireland (AHCI) is a non-profit, charitable support group
set up and run by parents of children with AHC in Ireland (Charitable Tax Exemption No. CHY 20344).

There are approximately eight known cases of AHC in Ireland, although because the condition is
often misdiagnosed the true number could be greater.

The main object of the AHCI is to preserve and protect the health and promote the welfare of persons affected by AHC in Ireland and elsewhere through the provision of support to sufferers and their families, providing funds for research into the disease and advancing the education of the general public on the subject of AHC and its implications for families.

The Board:

Tom O’Brien - Chairman
Tom is Chairman and Founder of the AHCI and father to a eight year old girl with AHC. Tom realised that when his daughter was diagnosed there was no support network in Ireland for families living with AHC. This was the inspiration behind the foundation of the AHCI.

Tom is passionate about finding an effective treatment and cure for AHC. Tom regularly travels to overseas conferences so that the AHCI can stay connected with other patient bodies and stay involved with medical research being carried out abroad. Tom is also on the board of the AHC Federation of Europe.
 
Catriona Montgomery - Treasurer
Catriona is Treasurer of the AHCI and mum to Liam who is a 10 year old boy with AHC. Liam was diagnosed when he was 18 months, at the time Liam was only the 2nd child in Ireland to be diagnosed with AHC. Liam and Catriona have travelled to family support meetings in the UK and USA.

They have met many other families living daily with AHC. Catriona is keen to ensure that one of the main missions of AHCI is to provide a support network for parents and carers so that they can share their experiences of living with AHC.


Marie Mullin – Company Secretary
Marie Mullen is Secretary of the AHCI. Marie has a 12 year old daughter with AHCI. Her name is Orla and she was the first child in Ireland diagnosed with this condition. Marie and Orla have met several families in Boston and England with the same condition.

Orla attends mainstream school and is in 5th class. She has an SNA and gets three hours resource time a week in school. She also attends Enable Ireland and receives six week blocks of Speech Therapy, Physio and O.T.