Niamh Maguire 24/6/2004 - 9/2/2009

Niamh was born on 24th June 2004, a healthy 6lb 12oz. She was a very placid baby with the biggest blue eyes in the world. She barely ever cried and loved her sleep – maybe too much so, as she was often too tired to feed and as a result was slow to gain weight. At 7 weeks old she had her first (of many) seizures, and from that point onwards our lives changed forever.

The following 3 months were spent in hospital where she was thoroughly investigated, but medical professionals were unable to find any underlying abnormalities, although they did concede there was very clearly something wrong with her.

Over the following 9 months her seizures increased to 10, 20 then 50 a day - every day. Her development halted, she started needing to be fed through tubes and she was requiring more regular oxygen.

The drugs she was given did not help her seizures and by the time Niamh hit one year old she was having over 100 seizures a day - we were told to prepare ourselves that we could lose her any day – nobody could tell us what was wrong – only that she was very sick.

At 1 year old an abnormal EEG revealed she had a complex epilepsy syndrome called Migrating Partial Epilepsy of Infancy (MPEI).

She was started on a high fat ketogenic diet as a last chance of saving her life, and miraculously she became seizure free within 6 weeks – this was totally unexpected.

We were quietly optimistic that she had defied medical science - but our health professionals believed otherwise.

Although Niamh was no longer having seizures it was soon apparent that things were still not quite right with her – she still had an underlying problem, but nobody could tell us what this was.

Tragically the doctors were correct and Niamh’s development did not progress. She lost skills that she had learned and she developed further health complications including severe gastro-intestinal problems, a movement disorder (tremor) and strong dystonic spasms which caused her considerable pain.

At aged 3 and half a routine MRI revealed she had extensive damage to an area of her brain called the basal ganglia and the brain stem. This damage was consistent with an underlying metabolic disorder (most likely of mitochondrial origin) and we were told her condition was fairly far progressed and degenerative. We were given an approximate life expectancy of a further 1-2 years.

Niamh continued to fight hard to the end - even in her last few weeks, she smiled and laughed with us and her baby brother. 

Niamh passed away on 9th February 2009, aged 4 ½.

I am incredibly proud of my little girl, who fought so hard all the way through her short life – She enjoyed life to the full and we loved her unequivocally.  

It was not fair that our daughter had to suffer the way she did - Niamh had no chance of being treated for her condition as her medical professionals could not find the cause.

Through the research that the Lily foundations is funding, children like Niamh will be given the chance of being diagnosed at birth, treated effectively and have the chance of living a normal life.

We therefore support the Lily foundation in its mission to fund the research needed to develop early diagnosis of these debilitating metabolic and mitochondrial disorders, with the hope of saving many childrens lives and children suffering in the future.

Niamh has her own website as a resource for parents and families experiencing seizure like symptoms Niamh's Journey