News

Finding hope for little girl

Little miracle Artemissia.
Little miracle Artemissia.

A YEAR ago she was dying, but a world-first experimental treatment has turned little Artemissia into our miracle baby.

Artemissia had barely turned one when she was struck by a rare genetic disorder that began destroying her brain. Children with the illness, called Sandhoff disease, were not expected to live past their third birthday and nobody believed there was any hope for the little girl.

Today the disorder’s progress has been stopped and Artemissia, 2, has begun the long, slow climb back, thanks to the extraordinary efforts of her parents Alex and Kelly, her grandmother Colleen, and the help of volunteers and neighbours around their Burringbar home.

When The Northern Star first reported on Artemissia’s plight last Christmas her family had taken her home and had become experts in palliative care as they tried to make her comfortable in the days, weeks or months before the illness killed her.

But Alex (he asked the family’s surnames not be used after they were visited by a variety of mystic-style healers after previous stories on them), despite having no medical training, was also fast becoming one of Australia’s top experts on Sandhoff disease.

Within a few months of Artemissia falling ill he had made contact with US experts who had been working on ways to fight the disease since it was discovered in 1967, and early this year found an experimental treatment for a related disease that might help his baby girl.

With nothing to lose and with the help of US experts and Australian and local doctors, Alex started Artemissia on a new drug, Pyrimethamine, in February, seven months before official US trials began.

Artemissia’s treatment goes well beyond the new drug. Alex, Kelly and Colleen work in shifts so someone is constantly monitoring and working with the child. She also receives regular physiotherapy and other treatments.

A year ago she was paralysed, blind and deaf, and needed morphine to control the pain and other heavy medications to pull her back from the brink in various emergencies.

Her medical chart tells the story. Within a few weeks of starting the new treatment the morphine she needed dropped dramatically, as did the number of emergencies.

Today Artemissia still needs around-the-clock care, but is largely morphine-free and has not had a medical emergency for months.

And the changes are visible elsewhere as well.

“A year ago if she squeezed your finger it was a big deal,” Alex said. Today, when she is put in a device to help her stand, she can hold her head up and brace herself with her arms. Her sight and hearing seem to be slowly returning.

“You can see the paralysis going,” Alex said. “You can see many different areas going forward. Improvements are happening, tiny as they are.”

The progress, along with advances in gene therapy, mean it is likely Artemissia may make a full recovery in a few years.

Despite her affliction, Artemissia has many more blessings than an experimental drug. Kelly said one of the most important elements of her treatment was the love given by those caring for her.

“We do what we can, but the only thing that’s important to me is we just love her. It’s that simple,” Kelly said.

That love goes beyond the family into the community.

The elderly palliative care volunteer still comes around, even though Artemissia is now officially in rehabilitation, because she adores the child.

“Everyone’s got a role to play, including Artemissia,” Kelly said. “She remembers that she’s loved and through that has chosen to stick around for as long as she wants to.”

How to help

THE broader Burringbar community is rallying to prepare a massive Australia Day fundraiser to help Artemissia’s family.

Georgina Wood, of the Burringbar District Sports Club, said the small community would host Tweed Shire’s Australia Day celebrations on January 26 and were hoping to raise money to help Artemissia and her family, as well as children’s charity Paradise Kids/Hopewell Hospice.

The money raised would be invaluable to the family. Their intense focus on helping Artemissia meant they have been unable to put the same level of energy into paid work they normally would.

If you want to help the family, you can donate at any Westpac branch to BSB 032 584; account number 190 827; account name Ms Kelly Kimborley Ryan, as trustee for Artemissia.



Teen actor stars in The Dark Tower

BIG SCREEN: Alstonville's Nicholas Hamilton will be seen in some exciting films this year.

Alstonville's Nicholas Hamilton is part of the cast of the film.

Hogan holds firm on Australia Day date

MP Kevin Hogan at the opening of the Ballina Marine Tower on North Wall.

PAGE MP slaps down Lismore City Council over planned date change

Gig guide: hot shows on our stages this week

DUO: Beccy Cole and Adam Harvey are touring together to perform songs from their album Great Country Songbook Vol 2. Adam Harvey and Beccy Cole have stayed at the forefront of Australian country music for close to two decades, and the combination of these two dynamic performers has proven to be a hit with live audiences having toured the country on several occasions since their first encounter almost 20 years ago. Adam and Beccy have finally taken their favourite list of country duets to the studio and they have now hit the road with The Great Country Song Book Volume II Tour. At the Ballina RSL Club this Saturday from 8.30pm. Details from ballinarsl.com.au

Music, theatre, karaoke, forums and more

Local Partners

Design student makes it to semis for prestigious awards

DAREL Bonanno has been selected as a semi-finalist in the international Adobe Design Achievement Awards.


Bee Gees music is 'stayin' alive' 40 years later

HOT HITS: The Australian Bee Gees Show is coming to the Northern Rivers.

Show celebrates 40 years of Saturday Night Fever

Expo to help you discover your career

Do you know someone who would benefit from a Careers expo?

Richmond Valley youth are invited to careers expo on August 28.

Connect with North Coast artists on 2017 Mud Trail

On the path of the 2017 North Coast Mud Trail.

"To have completed a piece created by your own hands...is special.”

The two stars who intimidated Chris Hemsworth

HE plays a superhero on the big screen, but Chris Hemsworth has revealed that he was ‘weirdly shaken’ when he met two other big name actors.

Sam Newman: How a Playboy magazine changed everything

The new crew of The Footy Show.Source:Supplied

How a Playboy magazine changed everything.

Leah slams Matty: ‘I was incredibly disappointed’

Leah says she was ‘incredible disappointed’ with Matty J.

BACHELOR evictee's controversial chat with Kyle and Jackie O.

John Eales finds peace with the haka

Inia Maxwell and John Eales in a scene from the documentary John Eales Reveals: The Haka.

Rugby legend is on a quest to learn about a sacred Maori tradition/

The Bachelor recap: Secret pasts publicly exposed

Matty J is left speechless on The Bachelor.

TWO Bachelor contestants’ secret adult pasts have been exposed.

Mother-daughter duo passes Top of the Lake test

Alice Englert, Jane Campion and Nicole Kidman pose for a photograph at the Top of the Lake: China Girl Australian premiere in Sydney.

Alice Englert is a feisty addition to the cast of mum's crime drama.

What's on the big screen this week

Idris Elba in a scene from the movie The Dark Tower.

IDRIS Elba debuts as the Gunslinger in The Dark Tower.

Airbnb, Stayz and co tipped to squeeze Coast housing market

HOLIDAY BOOM: Airbnb letting is putting a further squeeze on long-term rentals.

Councils exploring options to manage the industry

Developer tears up couple's contract for new home

Jade and Edward Roberts were stung by the sunset clause on the first day of their honeymoon.

The developer has the right to do this under the sunset clause

Reports of Ibrahim family connections to farm and food hub

John Ibrahimat Bluesfest 2012.

REPORTS circulate colourful Sydney family have investments on the NR

Stunning, heritage-listed Coast home going under the hammer

STUNNING: Buderim House, a stunning heritage-listed Queenslander estate, is going to auction.

Coast home that played host to royalty is set for auction