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Niamh's Journey

Linked Organisations

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Feb 2012

I received an e-mail from Prof Doug Turnbull regarding the issues surrounding prevention of transmission of mitochondrial disease. He stressed how important it is that families have their say so I have attached the forms below for anyone who is interested.

Explanation Letter

Response Form


March 2010

Niall and I have been involved with a publicity video for the Lily Foundation which involved us discussing our experience of living with a child with a condition with no cure and how we made the most of her life, knowing that it would be a short one.
The Lily Foundation raises funds for desperately needed research into mitochondrial and metabolic condition and Niamh's doctors believe that this was the underlying cause of her MPEI.

The video is about 15mins long and it quite emotional so have a pack of tissues handy.


Today 9th February 2010 is one whole year since we lost Niamh.

I can’t actually believe it’s been a whole year since I held her in my arms and jiggled her to make her giggle. In some ways it feels like yesterday, but in other ways like a lifetime ago.

Not a day goes by when we don’t wish she was still here or when we don’t wonder why it had to happen to her. But instead of grieving for what we have lost, we are trying to move forward with what we can do to make a difference through The Lily Foundation and Matthews Friends.

I will ask that anyone who was moved by Niamh’s life, courage and determination, to take a moment to think of her, light a candle, release a balloon, a sky light, read a poem, say a prayer, do something to remember her life and how brave she was.

Sweet dreams my little angel Niamh x


I just wanted to wish you all a Happy New Year

I sometimes feel strange saying that to many of you as so many of us have lost our children in the last year or two and life feels very far from 'happy' for us most of the time. Others are still spending weeks or months in hospital with their little ones, full of uncertainty and worry and even when are kids are going though good patches there are still the trials of life in general to manage so, I guess what I am trying to say is that

I am hoping that this year will bring smiles not tears, and for those that have lost babies I hope this year brings healing.

Thinking of you all and looking forward to a bright 2010.


Usually we make our Christmas cards with pictures of Niamh and Conor on them, but having lost Niamh this year to epilepsy it just doesn’t seem quite right to make them without her…..
So instead of sending cards, we have decided to make a donation to “Matthews Friends” which is a childhood epilepsy charity that supported us fantastically during Niamh’s life.

If anyone else fancies doing the same and are looking for a worthy charity to support we have attached the link below

We send you all Christmas Good Wishes and hope you have a relaxing Christmas break and a Happy New Year!

Alison, Niall, Niamh and Conor x