True-Life
We don’t know how long my girl has left
Agnes Bordas, 36, Dungannon, Co Tyrone
Watching my daughter Sara, then 3, playing in the park, I beamed with happiness.
It was July 2020 and my little girl was my pride and joy.
So friendly and happy, she was always putting smiles on strangers’ faces.
‘Oops, watch out for that bench!’ I shouted.
But it was too late, Sara had bumped into it.
‘Another ouchie,’ I soothed, rubbing her knee. I’d noticed she’d been a little clumsy lately.
Unbalanced.
As her friends were finding their feet, running and jumping, Sara was growing accident-prone and uncoordinated.
Had started to walk with a wide gait.
Almost as if she was tipsy. ‘She’s always bumping into things,’ I said to her dad, my partner Claudio, then 43.
But we weren’t too worried. Only, when Sara started playgroup in September 2020, the teacher called us in.
‘You should see a doctor about her balance,’ she advised us.
We did, and after observation, our GP agreed and referred us to a paediatrician for tests and scans.
The paediatrician revealed Sara had cerebral ataxia, a group of disorders affecting coordination, balance and speech.
An eye exam revealed her eyesight was deteriorating.
Then, in February 2021, after further tests, a neurologist explained the cerebellum part of Sara’s brain, which controls movement, balance and motor skills was underdeveloped.
Despite further tests, they didn’t know what was causing it or how to treat her.
‘I’m 90% sure it’s progressive,’ a consultant said, explaining that Sara’s condition would likely get worse.
She could end up in a wheelchair.
The news floored me. My little girl loved running about and playing. ‘It’s not fair, why her?’ I sobbed to Claudio.
As doctors weren’t sure what was causing it, there was nothing they could do to help her until further genetic testing got to the bottom of things.
Meanwhile, we’d always wanted a sibling for Sara, and hadn’t wanted to leave too much of an age gap.
‘I’d advise waiting until we know more about Sara’s condition,’ specialists said. I nodded. There was a chance this mystery condition that had affected Sara would affect our next child.
And anyway, we wanted to be fully focused on her.
Searching for answers and a clearer prognosis, Sara underwent three different types of genetic testing, including an advanced test called genome sequencing.
While we waited for the results, in September 2021, Sara started school.
She thrived, learning her numbers and letters and making little pals who didn’t seem to question why she walked differently or was more clumsy than them.
As I started reading the results my
