A mum whose family's life changed "in the blink of an eye" when her son almost died from the chickenpox virus is calling for better services for children with acquired brain injuries.

Six years ago, Olivia Conway's son Cian, now 12, was left fighting for his life after having a stroke at home. Doctor's believe he had a severe reaction to the chickenpox virus, which is rarely deadly for children. The mother, from Co Tipperary, is now a family carer for her son, a job she says is made even harder as getting adequate services is "a postcode lottery".

Olivia said: "It was very serious initially, there was an acute phase where he was fighting for his life. At one stage, we had to bring up the rest of the family to say their goodbyes."

After a craniotomy - an intense surgery which sees the removal of a part of the skull for a period of time - little Cian was on the long road to recovery. He spent 20 weeks in hospital, as his loving parents stayed by his side.

Olivia told the Irish Mirror: "He was a six-year-old boy, but it was like the care needs of a baby. He was fed through a tube and we turned him every few hours in the bed. He made improvements and he surpassed all the odds. Initially, we were told he'd never speak, he'd never walk, but he's no longer a wheelchair user. With early intervention and appropriate rehabilitation, the brain is amazing. There's so much healing that can go on with the right services and the right intervention."

Now 12 years old, Cian's mum describes him as "very strong-minded, independent, competitive, extremely social," and he has a great sense of humour. Due to his acquired brain injury, he struggles with his speech, the use of his right arm and hand, fatigue management, and recall and memory processing.

The mother-of-four admits that it has been a tough and long road, and being a carer has its challenges. She said: "It's a journey from day one. You have to educate yourself on an acquired brain injury and no two patients are the same, no two sets of needs are the same.

"But you find yourself wearing multiple hats. You nearly have to be a physiotherapist, an occupational therapist, a speech and language therapist, a teacher, a counsellor. There's also an element of acceptance and having to accept the role you're in. It is a permanent role all day, every day, 24/7 and forever more. There is no end in sight for a lot of people and there is often fear around thinking about what the future holds.

"Carers go above and beyond for the person they care for, often at a cost to their own health and life opportunities, sometimes reaching burnout." The mother also works part-time for Acquired Brain Injury Ireland (ABI Ireland), a charity that has been paramount in helping the family navigate Cian's injury.

Olivia said that getting access to the right services is a constant battle, as there is no organisation in Ireland with overall responsibility for the neuro physical rehabilitation journey of children with acquired brain injuries.

She continued: "Often it is dependent on the advocacy and persistence of the parents/carers, which should not be the case. Many carers are exhausted, overwhelmed and fatigued from their caring role and should not be expected to fight for their children's basic human rights.

"They need therapies in place. There's a lot of science and evidence out there to show that the sooner people get the support and the rehabilitation, the better prognosis they have." Carer's Week kicks off on June 9 as various charities, including ABI Ireland, aim to raise awareness of the important work family carers do.

As part of the awareness week, ABI Ireland has launched a new book to help families called Piecing it Together. It is intended to make life easier for families impacted by an acquired brain injury and includes personal accounts of carers' lived experiences, artworks, poetry, practical guidance, signposting, tools and resources.

Source: Cork Beo.