Shona Simpson, of Cupar in Fife, witnessed her mother Sandra become paralysed from the neck down and unable to communicate after suffering a brain haemorrhage and meningitis on Christmas Day 2001. She died on her 63rd birthday in April 2012 after spending 11 years "trapped in her body".
The 36-year-old's youngest son, Kai, contracted the disease aged just seven months in 2008, and only survived unscathed thanks to a quick-thinking family friend and medical staff.
Her brother Stephen, now 44, battled viral meningitis as a four-year-old in 1974 and went on to make a full recovery.
Ms Simpson has now become a volunteer team leader with Meningitis Now, which was formed after Meningitis UK and the Meningitis Trust merged in April 2013.
She joins a three-strong Scotland team to help the charity fund pioneering preventative research, raise awareness and support survivors and their families.
"Sadly my mum was unfortunate - watching her being trapped in her body for 11 years was just heartbreaking," she said.
"Knowing she could understand everything but not do things like tell me she loved me or how proud she was of her grandsons Josh and Kai broke my heart. But the love my dad, who nursed her, was important and we made the most of it.
"Kai was more fortunate - for that my husband Mark and I are so grateful. Knowing what meningitis can do to a family makes me more determined to put myself out there and help, so when I was asked to consider the role I was honoured."
Ms Simpson is to start her new role by organising a charity event to mark the second anniversary of her mother's death, a week on Saturday, with a coffee morning at Cupar Parish Church, and is already preparing other ideas for the future.
"Holding the event on the anniversary of mum's passing, on what would've been her 65th birthday, is going to be emotional, but great," she added. "Doing something positive and fun is what she'd have wanted - I hope she'd be proud of me joining the team. We hope for a big crowd."
Meningitis, usually caused by bacteria or viruses, is inflammation of the membranes that surround and protect the brain and spinal cord and can often strike at the same time as septicaemia, a form of blood poisoning.
One in ten people with bacterial meningitis will die and at least one-third of survivors will be left with lifelong after-effects such as hearing loss, epilepsy, limb loss or learning difficulties. The early signs and symptoms of meningitis and septicaemia can be similar to flu and include fever, headache, nausea, vomiting and muscle pain.
Meningitis Now community fundraiser Jo Stevenson said: "Shona's family have suffered too often from meningitis. It's a terrifying disease and her determination to help address fear and give hope to families whose lives have been devastated by the disease is amazing. It's a pleasure to welcome her to our volunteering team."