This week I received an email from a lady studying a course that had a module about Down syndrome and the question she asked was whether I could tell her some of the advantages and the disadvantages of having a child with this disability.

First off, I thought, from whose perspective? From the person who has Down syndrome? The parents? Those who are neither of the previously mentioned? So I asked her to be more specific  - not necessarily because I had an answer in mind but simply because before you could even begin to think of a suitable response, you would have to have this information.

She returned saying that she was interested in the advantages/disadvantages from a parental point of view.

Now, if you happen to be the lady in question, I apologise for the delay in getting back to you. I am not a parent of a child with Down syndrome and therefore could only supply what would have to be horribly generalised answers – the kind that are dreamt up and not lived through.

But if your child has Down syndrome, maybe you can help? Can I ask you to let me know what you would consider the answer to this question should be. It might make for an interesting list and your input would be greatly appreciated.

Last week I travelled to Cork to meet with our organising committee for Buy My Dress and to give a short presentation to the members of DSI Cork about the event and our plans to fund – using the income from Buy My Dress - a second Down Syndrome Liaison Nurse to Cork University Hospital.

I spoke at length (probably!) about how I feel it is so important that we invest in developing professional medical expertise in this country for the future care of all people with Down syndrome in Ireland. By employing nurses in this area we will be bringing long-awaited regional support to parents throughout the country and developing a ground-breaking new team of professionals who will have, and will share, an in-depth understanding of the problems that face new parents in the early years and beyond. I am hopeful that when the time comes for us to begin the funding to Cork, that we will have some financial support from the counties that will directly benefit from the position. 

Angela - our exisiting DS Liaison Nurse - sent me a link this week to the GMTV site in the UK which reports on a young woman whose baby was born with Down syndrome and who wrote to GMTV to tell them about her experience as follows:

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