Shauna McPhillips is 6 year old daughter of Declan and Marie McPhillips from Scotstown and she suffers from a very rare condition known as Rett Syndrome. It is so rare that few doctors have ever encountered it and very few know how to diagnose it and treat it. Similarly the authorities are not fully aware of the needs of the patient and the family and the support from Government and HSE is limited. There is no known cure at the moment and it can demand a lifetime of 24/7, 365 days per year care, which in this case is being provided by her family, Declan, Marie and her sister, Sinead.
Last year a small group decided to set up a Trustee Fund so that financial assistance would be available to Declan and Marie to provide physiotherapy and other therapies, which would benefit Shauna and make her condition more comfortable. This has been of great assistance to the family and has helped to ease their burden somewhat. However we now need to replenish that fund as we want to continue to assist in the provision of the activities, which clearly improves the quality of Shauna’s life. She has been accepted into a research programme in the UK and also in Australia, which will entail added expenses, but this research is advancing the knowledge of the condition and will hopefully lead to a cure in the long term.
Part of our efforts to raise the funds will be a major event to be held in the Hillgrove Hotel on Sunday May 6th 2012 at 8pm. We have entitled it ‘Talk Sport for Shauna’, as we will have top personalities in various sports participating in a panel discussion and fielding questions from the floor. The night will be chaired by a top RTE GAA commentator and it promises to be a very entertaining night for all sports people. Árd Stiurtheoir, Paraic Duffy, who is a Patron of the Rett Syndrome Association, has assisted the organisers and is very supportive of the work being done.
Coiste Chontae Mhuineacháin has also promised its support for this venture.
Tickets priced at €10 will go on sale in two weeks time and the organisers hope that all GAA Clubs in County Monaghan will assist by helping to sell tickets for this event, which will make such a difference to Shauna’s life and mean so much to her family. Please be as generous as you can.
Peadar McMahon; Gerard Sherry; Seamus McQuillan; Liam Stirrat; Declan McPhillips
For further information – Contact Peadar McMahon – 0860443300 or any of the committee.