You are using an older browser version. Please use a supported version for the best MSN experience.

Girl, 7, diagnosed with brain tumour after check-up at opticians dies

Daily Mail logo Daily Mail 1/27/2021 Hayley Richardson For Mailonline
a group of people looking at the camera: MailOnline logo © Provided by Daily Mail MailOnline logo

A seven-year-old 'warrior' who captured the hearts of the nation with her brave cancer fight has died - 14 months after being diagnosed with an inoperable brain tumour following a check-up at the opticians.

Adorable Edie Jackson, from Waltham Abbey, Essex, was just six years old when she and her mother Lois, 39, father Craig, 40, and big brother, Charlie, 10, were dealt a devastating blow in November 2019.

She was diagnosed with a high-grade Diffuse Intrinsic Pontine Glioma (DIPG). The cancerous tumour is the deadliest form of childhood cancer, with an average survival prognosis of just eight to 12 months.

Edie underwent an intense 13-day course of radiotherapy to shrink the tumour, but this type almost always begins to grow again within months. 

a person sitting next to a teddy bear: Adorable Edie Jackson, from Waltham Abbey, Essex, captured the hearts of the nation with her brave cancer fight. She has now tragically died © Provided by Daily Mail Adorable Edie Jackson, from Waltham Abbey, Essex, captured the hearts of the nation with her brave cancer fight. She has now tragically died a group of people wearing sunglasses: Edie was just six years old when she and her mother Lois, 39, father Craig, 40, and big brother, Charlie, 10, were dealt the devastating blow in November 2019 © Provided by Daily Mail Edie was just six years old when she and her mother Lois, 39, father Craig, 40, and big brother, Charlie, 10, were dealt the devastating blow in November 2019

Edie's plight captured the hearts of celebrities including Made In Chelsea star Nicola Hughes and TOWIE'S Amber Dowding, who got involved with fundraising to send Edie to New York last March for costly clinical trials.

But despite raising almost £300,000 on GoFundMe and Edie managing to undergo the intense, targeted chemotherapy in the US, the youngster lost her cancer battle yesterday.

Edie's aunt Emmie Adams announced the news on the Edie's Fight Facebook page this morning. She wrote: 'It is with an indescribable sadness and a deep sense of pride that we write to tell you that Edie, our Warrior Princess and the bravest girl we know, passed away, surrounded by her loving family at 5.30pm yesterday.

'We are sad because she is no longer with us, although our seven years of beautiful memories of her will always live on, but also proud at the life she led and the legacy she left.

a woman sitting on a bed: Craig told how they booked Edie, pictured with her brother Charlie, an appointment at the opticians when she began experiencing double vision and her left eye started to turn inwards, causing her to develop a squint

Craig told how they booked Edie, pictured with her brother Charlie, an appointment at the opticians when she began experiencing double vision and her left eye started to turn inwards, causing her to develop a squint
© Provided by Daily Mail

'Edie united the most amazing community around a cause you all held so dear and we want to thank you all for the support and strength you have shown us - we could not have done it without you.

'Edie is forever seven. She will never be forgotten and leaves the biggest, Warrior Princess shaped hole in all our lives.


Video: I've recovered from COVID, do I need vaccine? (WCVB Boston)

UP NEXT
UP NEXT

'We will take some time to begin processing this devastating news and will update on arrangements for a celebration of her life in the coming days. Grief leaves a heartache no one can heal, love leaves a memory no one can steal.'

Craig previously told how they booked Edie an appointment at the opticians in November 2019 when she began experiencing double vision and her left eye started to turn inwards, causing her to develop a squint.

The proud family were initially against starting a fundraiser, but have been overwhelmed by the response © Provided by Daily Mail The proud family were initially against starting a fundraiser, but have been overwhelmed by the response

From there the optician referred the family to their GP and sent a letter requesting for Edie to be seen urgently by a specialist.

'We immediately felt very nervous seeing the word "urgent" on the optician's referral letter, so we booked a private appointment at Moorfields Eye Hospital on November 25th,' Craig recalled.

'From there we were sent the same day to Harlow Princess Alexandra Hospital for an MRI, the results of which were sent to Great Ormond Street Hospital (GOSH). Within a few hours we were told Edie had a brain tumour.

'Once the scans had been reviewed we were moved to GOSH and the worst possible news was confirmed - not only did Edie have a brain tumour, it was an aggressive one called Diffuse intrinsic pontine glioma (DIPG) in a part of the brain stem called the pons. 

a little girl playing with a frisbee: Edie's aunt Emmie Adams announced the news of her passing on the Edie's Fight Facebook page this morning © Provided by Daily Mail Edie's aunt Emmie Adams announced the news of her passing on the Edie's Fight Facebook page this morning a group of people posing for the camera: The family is looking to publish a petition for additional DIPG funding and research and will need 100,000 signatures for it to be considered by the petitions committee for debate in Parliament. Pictured: Edie with mum Lois and brother Charlie © Provided by Daily Mail The family is looking to publish a petition for additional DIPG funding and research and will need 100,000 signatures for it to be considered by the petitions committee for debate in Parliament. Pictured: Edie with mum Lois and brother Charlie

'The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.'

As the pons is located in the centre of the brain, a surgeon could not get to the tumour without damaging the surrounding portions of the brain. Even if the tumour could be accessed, total removal would be impossible.

What is a DIPG?

Diffuse Intrinsic Pontine Glioma or 'DIPG' has recently been renamed 'Diffuse Midline Glioma' and is the second most common type of primary, high grade brain tumour in children.

High grade brain tumours tend to grow quickly and are more likely to spread to other parts of the brain or spinal cord.

They are sometimes referred to as being 'malignant' or 'cancerous'.

DIPGs originate in an area of the brain, and more specifically the brainstem, called the pons.

The pons is an area deep within the lower part of the brain which is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.

The cause of brain tumours, including DIPG, is not yet known.

A child with a DIPG may display certain symptoms including:

Information sourced from www.thebraintumourcharity.org

Edie started radiotherapy on December 2, while her parents set about researching specialists all over the world who are working to find an effective treatment strategy for DIPG. 

Craig said their daughter was an 'absolute star' and stayed very brave and strong throughout her ordeal.

The proud family were initially against starting a fundraiser, but were overwhelmed by the response. 

'The harsh reality is that illness and disease does not discriminate, and whilst we would trade everything we have for Edie to be OK, we are going to need some help,' Craig said at the time.

'We could never have been prepared for this. Lois's work situation will have to change and it has turned life upside down. But the response and generosity we have received so far is overwhelming and we are so grateful.'

The Edie's Fight Facebook page had garnered almost 6,000 members - and dozens of people have already paid their tributes to Edie.

Sally Holloway commented: 'RIP beautiful brave princess Edie. You were an inspiration and a fighter who will never be forgotten.

'My heart and thoughts go out to Edie's unbelievably amazing, brave and strong family, that did everything in their power to help Edie to try and fight this.'

Lyn Long wrote: 'One of the bravest little girls I know who put up the biggest fight. Sweet dreams Warrior Princess.'

And Lesley Reynolds posted: 'My heart goes out to you all, thinking of you all. RIP brave beautiful Edie, heaven has gained the most beautiful and brave girl, sweet dreams.' 

Read more
AdChoices
AdChoices

More From Daily Mail

image beaconimage beaconimage beacon