Niamh was born on 24th June 2004, a healthy 6lb 12oz.
Niamh started having seizures at 7 weeks old. She was thoroughly investigated by 3 hospitals and all her tests came back clear.
She tried a huge number of anti-convulsant drugs but none of these helped her.
At 1 year old she was diagnosed with an epilepsy syndrome called MPEI.
She was started on the ketogenic diet as a last chance of saving her life and she became seizure free within 6 weeks.
- it was totally unexpected and changed her life.
Although Niamh was no longer having seizures it was soon apparent that things were still not quite right with her.
Her development did not progress and she developed further severe health complications.
At aged 3 1/2 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 timescale of 1-2 years.
Niamh passed away on 9th February 2009,
Just under a year from the date of these secondary findings.