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EMYVALE

Rett Syndrome.

I’m sure that like you, when I first heard the name Rett, I guessed it might be a sickness but after that I knew nothing about it. However I was introduced to this condition by Declan and Marie McPhillips from Scotstown, whose young daughter, Shauna, suffers from Rett Syndrome, and I was appalled by their story.

Rett Syndrome is a neurodevelopmental disorder affecting mainly girls and results in severe and multiple disabilities. It is usually characterised by a period of normal development followed by a phase of regression at approximately 15 months of age where many skills , such as the ability to walk, speech, and hand function are lost. However it is not a degenerative disorder and these beautiful girls are capable of life long learning and benefit greatly from therapeutic and social activities.

The Rett Association of Ireland was set up by the parents of children suffering from Rett Syndrome. Its aim is to support families and to raise awareness, among the public, of this condition and to assist the medical, theraphy and teaching professionals, who work with the girls. The Association organises Conferences and bring International experts to speak to the parents and professionals. They also organise neurological assessments to help in the medical management of the condition.

Rett Syndrome is fairly rare as there are about 55 diagnosed cases in Ireland at the moment though it is thought that there are others who have not been diagnosed yet. The most serious aspect of all this is that the Government, the HSE, Social Welfare, and authorities in general seem to ignore the needs of these girls and their families. The girls require 24/7 care and attention and can have serious side-effects at times. This puts a massive strain on parents and siblings and makes family life very very difficult at times. The assistance forth-coming from the authorities it totally inadequate and is insufficient to cope with the situation never mind provide the help that can be of benefit to the girls.

To help provide neuroassessment for the girls Declan and Marie, with the help of friends, raised over €13,000 and presented it to the Rett Association. Paraic Duffy, Director General of the GAA and International Rugby star, Tommy Bowe agreed to act as patrons and presented the money at a special function in Croke Park recently. But this is only a beginning - doctors, Government and the HSE must realise the seriousness of Rett Syndrome and take heed of the needs of the families who find themselves in this position. They say that a nation can be judged by the way it looks after its children and its sick and, if this is so, then Ireland will certainly fall far short because the families of Rett Syndrome children and the children themselves seem to have been totally abandoned by Government. If you can help to raise awareness and assist in the efforts to get the authorities to help, then you will have done a great deed.

Declan and Gerard Sherry with Tommy in Croke Park.

On Right: Paraic Duffy, Director General GAA, and Tommy Bowe, Rugby International player, hand over funds to The Rett Syndrome Association of Ireland. In picture are: Alan and Alex Connolly, Bray; Damien and Shauna McPhillips, Monaghan; Paraic Duffy, Tommy Bowe, Kevin and Ciara Barry, Dungarvan; and John and Rachel Duff, Wicklow.

Paraic and Tommy with Declan, Marie and Shauna.