index Development History Clubs Comments Archives Links
silver hill

Shauna Meets Nathan.

The very popular and in Big Demand Country star, Nathan Carter, was performing in the Four Seasons Hotel, Monaghan, recently and prior to going on stage he had time to meet with Shauna McPhillips and her family. Shauna suffers from Rett Syndrome and it was terrific that Nathan gave time to find out about the condition and the problems faced by Shauna and her family on a daily 24 hour basis. He presented Shauna with a signed T-Shirt as our photo shows. Thanks to Nathan and his manager for giving the time to Shauna and her family prior to his performance in the hotel that night. It is comforting for the family to meet people who will take an interest in the Rett condition and hopefully the authorities will come to understand the condition and the needs of the sufferer and the family.
There are fewer than 100 Rett Syndrome people in Ireland though there may be more who have not been diagnosed or have been misdiagnosed with a different condition. It is caused by the mutation of a gene and mainly effects females. Generally males who have the condition seldom survive birth. Girls develop normally for the first 15 to 24 months and are usually stepping about, chatting, and fending for themselves as we understand normal behaviour for that age group. Then the mutation occurs and within weeks, and sometime days, all methods of communication stops and the child loses mobility and other abilities. Further complications develop - difficulty in breathing, swallowing, and in some cases seizures can become common, but the complications can vary from child to child. This rare condition is generally not something that doctors meet and so little is known about treatment. At international level great strides are taking place and in depth research is on-going. A drug has been developed in America which has had a very positive outcome when trials were conducted on mice and efforts are in train to get permission to hold human trials.

It is therefore important that Shauna and the other Rett sufferers are maintained as healthy as possible so that if this drug reaches the market then they will reap the full benefits of its powers. Shauna’s parents, Declan and Marie, have done tremendous work in raising the profile of Rett Syndrome in Ireland and are tied into research in a number of different countries worldwide. Time taken by Nathan Carter and other well-known personalities assists in raising that profile and hopefully the authorities will want to assist the research and forward the efforts at finding a treatment for the condition. Again it is the old story - the families are investing so much time, finance, and energy in caring for their children with little assistance from Government but if the families were to ask the state to care for the children in a hospital or special unit it would cost millions - but the families are absorbing most of the costs themselves and it is only right that the State should realise that greater assistance is needed for the families

Nathan Carter presents a signed T-Shirt to Shauna. Also in the picture are: parents, Marie and Declan, and sister, Sinead.

tydavnet
index