Due to rare epilepsy, a nine-year-old girl had to be revived more than 100 times by her mother.
Sam Slocombe, Devon, is raising awareness about Paige's condition known as Dravet Syndrome.
Mike, her husband, said that they hoped it would improve the care and diagnosis of others.
Multiple seizures can occur at night as well as during the day.
It is found in approximately one in every 15,000 live-born babies and is the most resistant form of epilepsy.
This means that the family must take essential medical equipment with them wherever they go.
Sam Slocombe stated that Paige has seizures and stops breathing. Her medical bag is always with her wherever she goes. It contains extremely potent drugs... and resuscitation equipment...
These things are vital in keeping Paige alive. She said that she has probably revived Paige more than 100 times.
Paige, who resides in Okehampton had a device implanted surgically that stops approximately 250 seizures per day.
Implants of the Vagus Nerve Stimulator or VNS send small electric shocks to your brain.
Sudden Unexpected Death in Epilepsy is much more common than other epilepsy types.
Sam Slocombe stated that "We don't know how long we have with Paige so every day is our last."
Dravet Syndrome UK stated that it hopes to raise awareness and help more people get the diagnosis and timely access to the treatment they need.
Galia Wilson, chair of Dravet Syndrome UK, stated: "The availability genetic testing has helped increase diagnostics and now there are better, more effective treatments too."
She said that "but wider awareness is required to bring these advances to the attention of as many patients as possible and their families if they are going to be of real benefit"
Follow BBC News South West via Twitter, Facebook, and Instagram. Send your ideas and stories to email@example.com