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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 12 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, paediatrician and nursery teacher. She excelled in her physical activities and they were sure she would start to focus on her talking soon. Mia 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, behaviour, occupational therapy, and a whole lot of love and patience.

In August 2012, aged three, 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.

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 late infantile Batten disease. Mia died in August 2018. She had just turned nine.

Small innocuous moments surprise me – ones I couldn’t really prepare for set me slightly off kilter,” says Mia’s mother Peta of life since her daughter’s death.

The pretty dresses hanging in the shop front. The gaggle of girls cartwheeling confidently, skating and carrying their board towards the water. I’m not envious but curious of them. I’m looking forward to watching Mia’s friends grow up, but it feels different: I’ll be even more on the sidelines, a distant cheerleader. The friendly mum banter in the playground feels clumsy, I second-guess my automated responses, ‘Is he your first?’, ‘How many children do you have?

The barista emphatically declares how lucky I am, surrounded by handsome boys. I notice and mentally calculate space and difficulty of access to cafes and restaurants, every ramp and staircase is accounted for. Could we have come here with Mia? Probably not. There are bright moments between the cloudy days. A walk through the bush, a dip in the ocean, an empty beach all to ourselves except for dolphins passing by, followed by an impromptu lunch. Blue sky, sparkling sea, thoughtful food and two compliant children.

I am lucky. Surrounded by my boys and escaping the world. I am sad too, miserable. Silently, Hamish and I congratulate each other having survived another moment. Tears spill, we share small smiles.

Peta Murchison
Extracted from the website Bounce4Batten , an international campaign to raise awareness about Batten disease.