Keira Mcmurdo, 3, is one of three people in the world with a genetic condition known as FUT8. Photo / Supplied
Keira Mcmurdo, 3, is one of three people in the world with a genetic condition known as FUT8. Photo / Supplied
An Invercargill toddler with a condition likely to cut her life short at the age of 4 is finding some comfort thanks to medicinal cannabis.
Keira Mcmurdo is one of just three people in the world with a rare condition known as FUT8.
For most of the 3-year-old's life she has suffered up to 30 seizures a day and cannot talk, walk or swallow.
For Keira's mum Sascha Abey, watching her beautiful daughter suffer has been heart-breaking.
"I'd never seen a seizure before. I remember her first one - she went blue and her eyes rolled back. It's really tough seeing your own child go through that and not being able to do anything," Abey told the Herald.
But, for the last month she has been given 1.5mL of Tilray cannabidiol (CBD) through her feeding tube every day and her seizures have dropped to less than five a day.
"She can reach [and push off] the bottom of the pool now, something she had never been able to do before. She is more engaged and now loves interacting with people, you can hear the joy in her voice," Abey said.
She said medicinal cannabis wasn't a cure but it was life-changing.
Keira's mum Sascha Abey says medicinal cannabis isn't a cure for her baby but has been life-changing. Photo / Supplied
"I just want to give my daughter the quality of life she deserves even if that's for less than a year."
Abey was 23 when she gave birth to her first-born, Keira.
The doctor noticed part of Keira's brain wasn't developing the way it should be when she was in the womb, Abey said.
Keira weighed just 2.4kg when she was born at 38 weeks.
After 18 surgeries, many due to having glaucoma which meant she needed drains inserted behind her eyes to help keep the pressure down, she was diagnosed with FUT8 in March last year.
"I'd never heard of it and many doctors I speak to haven't heard of it because it's that rare. It doesn't even have a proper name," Abey said.
The disease means she is unable to produce the right amount of glucogen her body needs for development, chief executive of New Zealand Organisation of Rare Diseases Dr Collette Bromhead said.
Bromhead said the condition was rarely diagnosed due to being so lethal that many don't make it.
"Keria is the third person in the world to have the lethal mutation."
Abey decided enough was enough and if she couldn't save her daughter she was going to do everything she could to give her a life she deserved.
"Keira's previous paediatrician mentioned medicinal cannabis as a last resort so I decided to do a bit of research.
"I was quite sceptical at first because I thought if it was really that effective why isn't it recommended or more easily available."
Abey pays $460 every 12 days for her daughter's CBD. A Givealittle page set up last month has raised over $2000 to help cover the costs.
She tracked down Auckland general practitioner Dr Graham Gulbransen who has treated more than 400 New Zealanders aged 2 to 92 with CBD.
The substance is found in cannabis and has potential therapeutic value but little to no psychoactive effects.
In September 2017, it was made legal that medical practitioners and pharmacies could import CBD products along with persons or companies holding a licence to sell medicines by wholesale.
Gulbransen said although it was illegal to promote the product he was getting emails and calls every day from doctors around the country wanting to know more about it.
"One of the reasons doctors are hesitant to prescribe it is because they're not trained or didn't know enough about it."
A bill that gives terminally ill people a legal defence for using illicit cannabis products passed its third reading in Parliament last month.
Health Minister David Clark made changes to the bill that expanded the defence to all people needing palliative relief, rather than just those with a year or less to live, as it previously was.
About Keira's condition:
• Keira is one of three people in the world with a rare genetic condition called FUT8.
• The disease means she is unable to produce the right amount of glucogen her body needs for development.
