NZ Herald
  • Home
  • Latest news
  • Herald NOW
  • Video
  • New Zealand
  • Sport
  • World
  • Business
  • Entertainment
  • Podcasts
  • Quizzes
  • Opinion
  • Lifestyle
  • Travel
  • Viva
  • Weather

Subscriptions

  • Herald Premium
  • Viva Premium
  • The Listener
  • BusinessDesk

Sections

  • Latest news
  • New Zealand
    • All New Zealand
    • Crime
    • Politics
    • Education
    • Open Justice
    • Scam Update
  • Herald NOW
  • On The Up
  • World
    • All World
    • Australia
    • Asia
    • UK
    • United States
    • Middle East
    • Europe
    • Pacific
  • Business
    • All Business
    • MarketsSharesCurrencyCommoditiesStock TakesCrypto
    • Markets with Madison
    • Media Insider
    • Business analysis
    • Personal financeKiwiSaverInterest ratesTaxInvestment
    • EconomyInflationGDPOfficial cash rateEmployment
    • Small business
    • Business reportsMood of the BoardroomProject AucklandSustainable business and financeCapital markets reportAgribusiness reportInfrastructure reportDynamic business
    • Deloitte Top 200 Awards
    • CompaniesAged CareAgribusinessAirlinesBanking and financeConstructionEnergyFreight and logisticsHealthcareManufacturingMedia and MarketingRetailTelecommunicationsTourism
  • Opinion
    • All Opinion
    • Analysis
    • Editorials
    • Business analysis
    • Premium opinion
    • Letters to the editor
  • Politics
  • Sport
    • All Sport
    • OlympicsParalympics
    • RugbySuper RugbyNPCAll BlacksBlack FernsRugby sevensSchool rugby
    • CricketBlack CapsWhite Ferns
    • Racing
    • NetballSilver Ferns
    • LeagueWarriorsNRL
    • FootballWellington PhoenixAuckland FCAll WhitesFootball FernsEnglish Premier League
    • GolfNZ Open
    • MotorsportFormula 1
    • Boxing
    • UFC
    • BasketballNBABreakersTall BlacksTall Ferns
    • Tennis
    • Cycling
    • Athletics
    • SailingAmerica's CupSailGP
    • Rowing
  • Lifestyle
    • All Lifestyle
    • Viva - Food, fashion & beauty
    • Society Insider
    • Royals
    • Sex & relationships
    • Food & drinkRecipesRecipe collectionsRestaurant reviewsRestaurant bookings
    • Health & wellbeing
    • Fashion & beauty
    • Pets & animals
    • The Selection - Shop the trendsShop fashionShop beautyShop entertainmentShop giftsShop home & living
    • Milford's Investing Place
  • Entertainment
    • All Entertainment
    • TV
    • MoviesMovie reviews
    • MusicMusic reviews
    • BooksBook reviews
    • Culture
    • ReviewsBook reviewsMovie reviewsMusic reviewsRestaurant reviews
  • Travel
    • All Travel
    • News
    • New ZealandNorthlandAucklandWellingtonCanterburyOtago / QueenstownNelson-TasmanBest NZ beaches
    • International travelAustraliaPacific IslandsEuropeUKUSAAfricaAsia
    • Rail holidays
    • Cruise holidays
    • Ski holidays
    • Luxury travel
    • Adventure travel
  • Kāhu Māori news
  • Environment
    • All Environment
    • Our Green Future
  • Talanoa Pacific news
  • Property
    • All Property
    • Property Insider
    • Interest rates tracker
    • Residential property listings
    • Commercial property listings
  • Health
  • Technology
    • All Technology
    • AI
    • Social media
  • Rural
    • All Rural
    • Dairy farming
    • Sheep & beef farming
    • Horticulture
    • Animal health
    • Rural business
    • Rural life
    • Rural technology
    • Opinion
    • Audio & podcasts
  • Weather forecasts
    • All Weather forecasts
    • Kaitaia
    • Whangārei
    • Dargaville
    • Auckland
    • Thames
    • Tauranga
    • Hamilton
    • Whakatāne
    • Rotorua
    • Tokoroa
    • Te Kuiti
    • Taumaranui
    • Taupō
    • Gisborne
    • New Plymouth
    • Napier
    • Hastings
    • Dannevirke
    • Whanganui
    • Palmerston North
    • Levin
    • Paraparaumu
    • Masterton
    • Wellington
    • Motueka
    • Nelson
    • Blenheim
    • Westport
    • Reefton
    • Kaikōura
    • Greymouth
    • Hokitika
    • Christchurch
    • Ashburton
    • Timaru
    • Wānaka
    • Oamaru
    • Queenstown
    • Dunedin
    • Gore
    • Invercargill
  • Meet the journalists
  • Promotions & competitions
  • OneRoof property listings
  • Driven car news

Puzzles & Quizzes

  • Puzzles
    • All Puzzles
    • Sudoku
    • Code Cracker
    • Crosswords
    • Cryptic crossword
    • Wordsearch
  • Quizzes
    • All Quizzes
    • Morning quiz
    • Afternoon quiz
    • Sports quiz

Regions

  • Northland
    • All Northland
    • Far North
    • Kaitaia
    • Kerikeri
    • Kaikohe
    • Bay of Islands
    • Whangarei
    • Dargaville
    • Kaipara
    • Mangawhai
  • Auckland
  • Waikato
    • All Waikato
    • Hamilton
    • Coromandel & Hauraki
    • Matamata & Piako
    • Cambridge
    • Te Awamutu
    • Tokoroa & South Waikato
    • Taupō & Tūrangi
  • Bay of Plenty
    • All Bay of Plenty
    • Katikati
    • Tauranga
    • Mount Maunganui
    • Pāpāmoa
    • Te Puke
    • Whakatāne
  • Rotorua
  • Hawke's Bay
    • All Hawke's Bay
    • Napier
    • Hastings
    • Havelock North
    • Central Hawke's Bay
    • Wairoa
  • Taranaki
    • All Taranaki
    • Stratford
    • New Plymouth
    • Hāwera
  • Manawatū - Whanganui
    • All Manawatū - Whanganui
    • Whanganui
    • Palmerston North
    • Manawatū
    • Tararua
    • Horowhenua
  • Wellington
    • All Wellington
    • Kapiti
    • Wairarapa
    • Upper Hutt
    • Lower Hutt
  • Nelson & Tasman
    • All Nelson & Tasman
    • Motueka
    • Nelson
    • Tasman
  • Marlborough
  • West Coast
  • Canterbury
    • All Canterbury
    • Kaikōura
    • Christchurch
    • Ashburton
    • Timaru
  • Otago
    • All Otago
    • Oamaru
    • Dunedin
    • Balclutha
    • Alexandra
    • Queenstown
    • Wanaka
  • Southland
    • All Southland
    • Invercargill
    • Gore
    • Stewart Island
  • Gisborne

Media

  • Video
    • All Video
    • NZ news video
    • Herald NOW
    • Business news video
    • Politics news video
    • Sport video
    • World news video
    • Lifestyle video
    • Entertainment video
    • Travel video
    • Markets with Madison
    • Kea Kids news
  • Podcasts
    • All Podcasts
    • The Front Page
    • On the Tiles
    • Ask me Anything
    • The Little Things
  • Cartoons
  • Photo galleries
  • Today's Paper - E-editions
  • Photo sales
  • Classifieds

NZME Network

  • Advertise with NZME
  • OneRoof
  • Driven Car Guide
  • BusinessDesk
  • Newstalk ZB
  • Sunlive
  • ZM
  • The Hits
  • Coast
  • Radio Hauraki
  • The Alternative Commentary Collective
  • Gold
  • Flava
  • iHeart Radio
  • Hokonui
  • Radio Wanaka
  • iHeartCountry New Zealand
  • Restaurant Hub
  • NZME Events

SubscribeSign In
Advertisement
Advertise with NZME.
Home / New Zealand

Saving Charlotte: Bennett to present Parliament with petition calling for funding of SMA drug

Alice Peacock
By Alice Peacock
Reporter·Herald on Sunday·
13 Apr, 2019 05:00 PM4 mins to read

Subscribe to listen

Access to Herald Premium articles require a Premium subscription. Subscribe now to listen.
Already a subscriber?  Sign in here

Listening to articles is free for open-access content—explore other articles or learn more about text-to-speech.
‌
Save

    Share this article

A Pukekohe family has launched a petition urging Pharmac to fund a drug for spinal muscular atrophy.

A 15,000-strong petition calling on Pharmac to fund a drug to treat spinal muscular atrophy is being presented to Parliament as the Auckland family behind it watch their daughter's health deteriorate.

National MP Paula Bennett is presenting the petition - written by mother Kristie Yeoman and grandmother Janine Yeoman - on May 1. Bennett met Kristie and her 2-year-old daughter Charlotte Bond, who has SMA, last month.

Bennett met Kristie and her 2-year-old daughter Charlotte Bond, who has SMA, last month.

SMA is a degenerative disease that affects the control of voluntary muscle movement. It's caused by a loss of motor neurons.

If untreated, the disease makes its sufferer weaker over time before causing an early death.

Advertisement
Advertise with NZME.
Advertisement
Advertise with NZME.

Spinraza is the only FDA-approved treatment for SMA sufferers. It isn't a cure but has been proven to slow or stop the effects of the disease.

Kristie hopes access to the drug would save Charlotte from an early death.

Last month, Pharmac deferred a decision on funding Spinraza for SMA patients aged 18 and under until the outcomes of two longer-term clinical trials were available - a move Kristie described as "devastating".

Advertisement
Advertise with NZME.
Charlotte Bond, 2, with her mother Kristie Yeoman. Photo / Dean Purcell
Charlotte Bond, 2, with her mother Kristie Yeoman. Photo / Dean Purcell

Charlotte was diagnosed with type 2 SMA just before her first birthday. She cannot walk unassisted, but uses a pink wheelchair to zip around in.

She is excluded from the very small pool of New Zealanders eligible for Spinraza through Biogen - the American company that makes it.

Biogen provides the drug free of charge to SMA sufferers under the age of 18 - but only those with type 1 SMA; the most aggressive of the three forms of the illness.

Without Government funding, the first year of Spinraza costs around $1 million. Hundreds of thousands of dollars are needed to continue the treatment for subsequent years.

Discover more

New Zealand

'This is his chance at life': Young 'superhero' to get life-changing drug

09 May 06:00 PM
New Zealand

'Depriving sick babies of right to life': Pharmac reasoning blasted

27 Feb 04:00 PM
New Zealand

Family of sick toddler makes big bid to get life-extending drug funded

09 Mar 04:00 PM
Editorial

Editorial: Why Pharmac should fund SMA drug

13 Apr 05:00 PM

Speaking to the Herald on Sunday, Kristie said she'd watched Charlotte's strength fade over recent weeks.

"She hasn't really been crawling as much, she hasn't been able to pull herself up - as she's getting older and she's getting heavier.

"She's started to say, 'mum I can't walk, my legs are broken'.

"I keep saying to her, 'we're going to try to get you some medicine, and it's going to make you walk'."

Kristie, her mother Janine and her partner Rick were trying to stay positive.

Charlotte Bond was diagnosed with spinal muscular atrophy just before her first birthday. Her mother Kristie Yeoman has watched her strength fade over the past three weeks. Photo / Dean Purcell
Charlotte Bond was diagnosed with spinal muscular atrophy just before her first birthday. Her mother Kristie Yeoman has watched her strength fade over the past three weeks. Photo / Dean Purcell

Their success in drumming up support for a petition Kristie and Janine launched early last month has provided some hope.

Advertisement
Advertise with NZME.

The online petition urging Pharmac to fund Spinraza for all Kiwis battling spinal muscular atrophy had 12,673 signatures before it closed on Tuesday.

Kristie believed signatures gathered from paper petitions she and her mother handed out would bump the total number of signatures up to around 15,000.

The family was "ecstatic" about the reaction.

Support and awareness was built on social media and through their own networks by a community of families affected by SMA.

"There's probably 10,000 people that now know what it is, how rare it is, and how important it is for this drug to be funded."

Bennett has also given her support to the petition, which she said makes a strong case for change.

Advertisement
Advertise with NZME.

She described Charlotte as an "absolute sweetheart".

"It is heartbreaking to look at such a gorgeous kid and know they are going to have to go through such a substantial amount of pain in such a short period of time."

Bennett said the Government's downvoting of a select committee inquiry into Pharmac was another blow to the SMA community.

"Part of the issue is how Pharmac is making the decisions, and why."

Meanwhile, Kristie Yeoman was holding out hope funding would be approved and fast-tracked.

If not, Charlotte and her family would likely move to Australia - where the drug was funded.

Advertisement
Advertise with NZME.

Kristie said this option was less than ideal - she has a strong support network in New Zealand and doesn't want to take Charlotte away from her family.

"But at the end of the day she needs that drug, wherever that may be."

Save

    Share this article

Latest from New Zealand

Premium
Business|companies

Tech Insider: UK tells retailers to use NZ’s Auror crime-fighting software

07 Jul 07:00 AM
New Zealand|crimeUpdated

'Do it now, run him over'. Teen who ran over mother's partner twice can finally be named

07 Jul 07:00 AM
New Zealand

Central Otago cell tower damage disrupts service, police seek leads

07 Jul 06:52 AM

From early mornings to easy living

sponsored
Advertisement
Advertise with NZME.

Latest from New Zealand

Premium
Tech Insider: UK tells retailers to use NZ’s Auror crime-fighting software

Tech Insider: UK tells retailers to use NZ’s Auror crime-fighting software

07 Jul 07:00 AM

PLUS: Medtech projected to earn $3.8b a year by 2028.

'Do it now, run him over'. Teen who ran over mother's partner twice can finally be named

'Do it now, run him over'. Teen who ran over mother's partner twice can finally be named

07 Jul 07:00 AM
Central Otago cell tower damage disrupts service, police seek leads

Central Otago cell tower damage disrupts service, police seek leads

07 Jul 06:52 AM
Hutt Valley baby suffers nine fractures, police seek information

Hutt Valley baby suffers nine fractures, police seek information

07 Jul 06:31 AM
Solar bat monitors uncover secrets of Auckland’s night sky
sponsored

Solar bat monitors uncover secrets of Auckland’s night sky

NZ Herald
  • About NZ Herald
  • Meet the journalists
  • Newsletters
  • Classifieds
  • Help & support
  • Contact us
  • House rules
  • Privacy Policy
  • Terms of use
  • Competition terms & conditions
  • Our use of AI
Subscriber Services
  • NZ Herald e-editions
  • Daily puzzles & quizzes
  • Manage your digital subscription
  • Manage your print subscription
  • Subscribe to the NZ Herald newspaper
  • Subscribe to Herald Premium
  • Gift a subscription
  • Subscriber FAQs
  • Subscription terms & conditions
  • Promotions and subscriber benefits
NZME Network
  • The New Zealand Herald
  • The Northland Age
  • The Northern Advocate
  • Waikato Herald
  • Bay of Plenty Times
  • Rotorua Daily Post
  • Hawke's Bay Today
  • Whanganui Chronicle
  • Viva
  • NZ Listener
  • Newstalk ZB
  • BusinessDesk
  • OneRoof
  • Driven Car Guide
  • iHeart Radio
  • Restaurant Hub
NZME
  • About NZME
  • NZME careers
  • Advertise with NZME
  • Digital self-service advertising
  • Book your classified ad
  • Photo sales
  • NZME Events
  • © Copyright 2025 NZME Publishing Limited
TOP