• Business
  • Life
  • Celebrity
  • Sport
  • Blog
  • Auto
  • Tech
Stories from SWNS
Advertisement
  • Home
  • News
    Living The Fantasy: An Interview With The Serpent Calls Author Christopher Bramley

    Living The Fantasy: An Interview With The Serpent Calls Author Christopher Bramley

    Sharp As A Razor: An Interview With Atheist Author Harry Margulies

    Sharp As A Razor: An Interview With Atheist Author Harry Margulies

    Karim Tahseen Khayat: Seeds Training Services and Digital Services

    Dig into Temporarily Insane by Carl Borgen

    Dig into Temporarily Insane by Carl Borgen

    From HID to LED

    From HID to LED

    Dying woman granted final wish to be reunited with her beloved horse and pet dogs one last time

    Dying woman granted final wish to be reunited with her beloved horse and pet dogs one last time

    Trending Tags

    • Trump Inauguration
    • United Stated
    • White House
    • Market Stories
    • Election Results
  • Business
  • Life
    • Celebrity
  • Tech
    Artificial Intelligence and Online Casino Games

    Artificial Intelligence and Online Casino Games

    What are the Latest Digital Marketing Trends?

    What are the Latest Digital Marketing Trends?

    Improve Your Financial Prospects With a Forex Trading Course

    Improve Your Financial Prospects With a Forex Trading Course

    Adsterra Malware Protection: How Does Adware Work?

    Adsterra Malware Protection: How Does Adware Work?

    How to Sell Your Online Store for Maximum Profit

    How to Sell Your Online Store for Maximum Profit

    From HID to LED

    From HID to LED

    Trending Tags

    • Nintendo Switch
    • CES 2017
    • Playstation 4 Pro
    • Mark Zuckerberg
  • Review

    The Legend of Zelda: Breath of the Wild gameplay on the Nintendo Switch

    Shadow Tactics: Blades of the Shogun Review

    macOS Sierra review: Mac users get a modest update this year

    Hands on: Samsung Galaxy A5 2017 review

    The Last Guardian Playstation 4 Game review

    Intel Core i7-7700K ‘Kaby Lake’ review

No Result
View All Result
  • Home
  • News
    Living The Fantasy: An Interview With The Serpent Calls Author Christopher Bramley

    Living The Fantasy: An Interview With The Serpent Calls Author Christopher Bramley

    Sharp As A Razor: An Interview With Atheist Author Harry Margulies

    Sharp As A Razor: An Interview With Atheist Author Harry Margulies

    Karim Tahseen Khayat: Seeds Training Services and Digital Services

    Dig into Temporarily Insane by Carl Borgen

    Dig into Temporarily Insane by Carl Borgen

    From HID to LED

    From HID to LED

    Dying woman granted final wish to be reunited with her beloved horse and pet dogs one last time

    Dying woman granted final wish to be reunited with her beloved horse and pet dogs one last time

    Trending Tags

    • Trump Inauguration
    • United Stated
    • White House
    • Market Stories
    • Election Results
  • Business
  • Life
    • Celebrity
  • Tech
    Artificial Intelligence and Online Casino Games

    Artificial Intelligence and Online Casino Games

    What are the Latest Digital Marketing Trends?

    What are the Latest Digital Marketing Trends?

    Improve Your Financial Prospects With a Forex Trading Course

    Improve Your Financial Prospects With a Forex Trading Course

    Adsterra Malware Protection: How Does Adware Work?

    Adsterra Malware Protection: How Does Adware Work?

    How to Sell Your Online Store for Maximum Profit

    How to Sell Your Online Store for Maximum Profit

    From HID to LED

    From HID to LED

    Trending Tags

    • Nintendo Switch
    • CES 2017
    • Playstation 4 Pro
    • Mark Zuckerberg
  • Review

    The Legend of Zelda: Breath of the Wild gameplay on the Nintendo Switch

    Shadow Tactics: Blades of the Shogun Review

    macOS Sierra review: Mac users get a modest update this year

    Hands on: Samsung Galaxy A5 2017 review

    The Last Guardian Playstation 4 Game review

    Intel Core i7-7700K ‘Kaby Lake’ review

No Result
View All Result
Stories from SWNS
No Result
View All Result
Home News

Family of baby boy given three months to live are desperately waiting to see if the NHS will pay for the drug that could save his life

Samantha Yule by Samantha Yule
February 28, 2019
in News
0
Family of baby boy given three months to live are desperately waiting to see if the NHS will pay for the drug that could save his life

Six month old Haris Khan in hospital.

0
SHARES
29
VIEWS
Share on FacebookShare on Twitter

The family of a baby boy given three months to live are desperately waiting to see if the NHS will pay for the drug that could save his life.

Six-month-old Haris Khan was born with a rare and debilitating genetic disorder, Spinal Muscular Atrophy (SMA), also known as floppy baby syndrome.

When his family were given the devastating diagnosis this month they were also delivered the mortifying blow that the drug that could give him a better, longer life had been pulled in November last year.

Now, Haris’ dad, salesman Shakeel, is joining a protest next month – along with other SMA families – to fight for the £450,000-a-year drug, Spinraza.

Father Shakeel Khan,31, and mother Renata,26, and mother Six month old Haris Khan in hospital.

They will be gathering outside the NICE offices in Manchester next Tuesday ahead of a crucial meeting to come to an agreement over funding.

In the meantime, adorable Haris, from Wythenshawe, Greater Manchester, is in intensive care at the Royal Manchester Children’s Hospital attached to an apparatus that helps him breathe.

His family of 31-year-old dad, mum, shop assistant Renata, 26, and nine-year-old brother Marijus, are staying at a local hotel so they can be at Haris’ bedside 24/7.

They fear each moment could be his last.

On February 14, specialist doctors told the family Haris has the severest form of the illness, type 1, which affects the nerve cells needed to control the muscles we use for moving, swallowing and breathing.

The irony is, that if Haris had been diagnosed sooner – he was born in August last year – he would have already been given the drug, as it available on a pre-approval basis.

Six month old Haris Khan in hospital.

The first British girl to receive it, Annabelle Rose Thomas, has come off breathing support, can swallow food and has even ridden a horse.

But last summer, the National Institute for Health and Care Excellence (NICE) said it was not recommending Spinraza be available on the NHS in England because the cost was deemed ‘too high for it to be considered a cost-effective use of NHS resources’.

It remains available in Scotland and several other European countries.

Biogen, the company which makes the drug, charges almost £600,000 for it in the US market.

It is offering Spinraza at a lower price of £450,000 for the first year in the UK, and offered an undisclosed discount to the NHS, but it was still not enough.

Shakeel said: “Only a hundred babies a year maximum need that treatment. We, as a country, are losing a hundred babies because we don’t think it’s justified to save them.

“These organisations are using my son as a bartering tool. The best I can do is to save my son, or keep him with us for as long as possible.

“I’m just beginning my journey in parenthood – I want him here as long as he can be.

“There is a one in four chance my next child will have this – we can’t have any more children.”

Six month old Haris Khan in hospital.

Amazingley, the Wythenshawe community had shown tremendous support for the Khan family.

Every neighbour on their street has a poster in the window about SMA.

Marijus’ school and the Rainbow Trust Children’s Charity are helping the family any way they can.

Whatever the outcome for Haris and the decision on March 6, Shakeel and Renata don’t want other families to go through the same ordeal.

“We might only have my Haris for a few months, so I’ve got to create a legacy for him,” said Shakeel.

“The NHS don’t screen for SMA at birth.

“Had they screened him in August when he was born, the treatment was available until November on the Early Access Programme.

“Eighty infants are on that – Haris would have been 81.

“That’s one thing we’re calling for.”

Haris is the youngest child with SMA to feature on a leaflet being handed out to all MPs this week by the charity Muscular Dystrophy UK.

Six month old Haris Khan in hospital with nine-year-old brother Marijus

Shakeel wants as many people as possible to be aware of the fight and support the cause.

“Every SMA parent is waking up thinking ‘is this our child’s last day?’ he said.

A spokesperson for NHS England said: “We understand how difficult and frustrating it is for families waiting for decisions to be taken on the funding of new treatments, which is why the company must price this drug responsibly and at a level which is both cost effective and affordable to the NHS.

“It is disappointing that Biogen chose to close the Early Access Programme for new patients with Spinal Muscular Atrophy Type 1 before the NICE assessment process had been completed.”

A JustGiving page has been set up to raise money to support the Khan family’s campaign to improve awareness of SMA. It is also where Shakeel is posting updates on Haris and his battle. You can visit and donate here: https://www.justgiving.com/crowdfunding/littleharis?utm_id=69

https://stories.swns.com/wp-content/uploads/drug-fight-the-308632-2.mp4
Previous Post

Why the tech industry is taking off in the south west

Next Post

Family left stunned by the arrival of nine St Bernard puppies after their pet found love with a rescue dog

Samantha Yule

Samantha Yule

Next Post
Family left stunned by the arrival of nine St Bernard puppies after their pet found love with a rescue dog

Family left stunned by the arrival of nine St Bernard puppies after their pet found love with a rescue dog

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Stay Connected test

  • 111 Followers
  • 60k Followers
  • 168k Subscribers
  • 23.5k Followers
  • 99 Subscribers
  • Trending
  • Comments
  • Latest
Women love cheesy chat up lines, a study has revealed

Top 20 cheesy chat-up lines ladies really love

March 5, 2014
The top ten most well-known bingo phrases

The top ten most well-known bingo phrases

January 21, 2014
The horses thunder towards a jump at the Grand National

Amazing racehorse names which never made it

April 23, 2014
HGH Injections Brands: Which Ones Are Best?

HGH Injections Brands: Which Ones Are Best?

January 14, 2019
Chris Fear, 33, outside the Coral betting shop which is refusing to pay out on his 485/1 winning bet

Boycott Coral! Bookmaker faces protest after refusing to pay out on a football fan’s 485/1 bet

184
Women love cheesy chat up lines, a study has revealed

Top 20 cheesy chat-up lines ladies really love

147
Women feel invisible to the opposite sex at the age of 51, researchers found

Women begin feeling invisible to men ‘when they turn 51’

138
UKIP candidate claims Jews murdered each other in the Holocaust in masterplan to create State of Israel

UKIP candidate claims Jews murdered each other in the Holocaust in masterplan to create State of Israel

105
Living and Working in a Small Canadian Town Like Banff

Living and Working in a Small Canadian Town Like Banff

May 13, 2022
Top 5 risks of addressable media advertising

Top 5 risks of addressable media advertising

May 6, 2022
The top 5 UK shopping centres with the highest footfall (and how this can help your business)

The top 5 UK shopping centres with the highest footfall (and how this can help your business)

May 4, 2022
How to build customer relationships and increase loyalty

How to build customer relationships and increase loyalty

May 4, 2022

Recent News

Living and Working in a Small Canadian Town Like Banff

Living and Working in a Small Canadian Town Like Banff

May 13, 2022
Top 5 risks of addressable media advertising

Top 5 risks of addressable media advertising

May 6, 2022
The top 5 UK shopping centres with the highest footfall (and how this can help your business)

The top 5 UK shopping centres with the highest footfall (and how this can help your business)

May 4, 2022
How to build customer relationships and increase loyalty

How to build customer relationships and increase loyalty

May 4, 2022
SWNS

SWNS all rights reserved. Copyright 2020

Follow Us

Browse by Category

  • Auto
  • Blog
  • Business
  • Celebrity
  • Gaming
  • Life
  • Lifestyle
  • News
  • Pictures
  • Property
  • Review
  • Sport
  • SWNS
  • Tech
  • Travel
  • Uncategorized

Recent News

Living and Working in a Small Canadian Town Like Banff

Living and Working in a Small Canadian Town Like Banff

May 13, 2022
Top 5 risks of addressable media advertising

Top 5 risks of addressable media advertising

May 6, 2022
  • About
  • Advertise
  • Privacy & Policy
  • Contact

Real Fix is a trading style of South West News Service Limited.
Copyright © 2020 South West News Service Limited.

No Result
View All Result
  • Business
  • Life
  • Celebrity
  • Sport
  • Blog
  • Auto
  • Tech

Real Fix is a trading style of South West News Service Limited.
Copyright © 2020 South West News Service Limited.