In July 2009, Mia was born to Hamish and Peta at the National Maternity Hospital in Dublin, Ireland. She was a healthy robust baby and met all her development milestones with ease. She was crawling at nine months, walked at twelve months and was a great enthusiast for baby sing song. She babbled early as a baby and her hearing and eyesight were fine at all developmental checks. Mia was an inquisitive, joyful baby and toddler, full of love and a little bit of mischief too.
The family relocated to Singapore in May 2011, when Mia was 22 months old. Her parents had mild concerns about her language development but were reassured by her GP, pediatrician and nursery teacher. She excelled in her physical activities and they were sure she would start to focus on her talking soon. Mia had enjoyed baby sign language with her Mum and had no problems communicating her needs or following instructions. Any slight behaviour changes or concerns at this time were explained by the 'terrible twos', the arrival of her younger brother Toby and the upheaval of moving to a new country and her Dad travelling for work regularly. As time progressed the concerns become more acute but nothing that her parents believed couldn't be overcome with dedication to speech, behavior, occupational therapy, and a whole lot of love and patience.
In August 2012, aged 3, Mia had her first seizure. She had her second a month later and after various tests (EEGs and MRIs) Mia was diagnosed with idiopathic photosensitive epilepsy. Development delays persisted but the family remained confident that they could manage Mia's epilepsy and hopeful she would outgrow the condition. In March 2013, Mia’s mother organized an epilepsy awareness day to help raise awareness of epilepsy in Singapore.
Unfortunately Mia's condition continued to deteriorate as her seizure frequency increased and her language and memory suffered. Mia began suffering frequent falls and lost the confidence to walk down steps or run.
In May 2013, nine months after Mia had her first seizure, she was diagnosed with the fatal condition called Batten disease or late infantile NCL.
Batten disease is a rare degenerative disease that will rob Mia of her ability to walk, talk and see. In a few years it will take her life.
Like all children Mia deserves love, joy and happiness.