Kettering daughter who lost 'best friend' mum to a brain tumour is campaigning to find a cure

Amy Heald has been appointed a role as young ambassador for The Brain Tumour Charity

Sunday, 12th December 2021, 5:16 am

A Kettering woman who lost her mum to one of the most aggressive types of brain tumour has secured a coveted role as a young ambassador for The Brain Tumour Charity.

Amy Heald lost her mum, Simone, to a glioblastoma brain tumour nearly three years after she was diagnosed with the deadly disease.

The 24-year-old was by her mum’s side as her carer as Simone's health rapidly declined. She lost her short-term memory, struggled with mobility and balance and underwent gruelling treatment in the hope of prolonging the family’s time together.

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Mum Simone with daughter Amy

Now Amy is aiming to keep her mum’s memory alive by raising awareness of the disease and helping others who are affected by it, by supporting The Brain Tumour Charity in a unique way as a young ambassador.

Amy said: “So many people have said that the relationship mum and I had was unique. She genuinely was my best friend in the whole world, which is why losing her hurt twice as much. I would talk to her about anything, she would be the one helping me to get ready for a first date, taking me clothes shopping for a new job or out for an ice cream when I was sad.

“Mum falling ill was completely out of the blue – there were no obvious signs leading up to it. She was sick a few mornings, which we put down to having a tooth removed, and she went off coffee which she usually loved. But that was it.

“Now, I have so many memories which I treasure of my amazing and kind-hearted mum. I will forever be thankful for her - I truly got the best of the best.”

Happy times with mum

It was in December 2016 that Simone, who was just 44 at the time, was diagnosed with a glioblastoma. One morning at work, she began feeling sick and then soon became delirious.

Amy’s dad, Martin, took Simone to A&E where she collapsed in the car park. Various scans and tests were carried out with a suspected bleed on the brain and a CT scan found the mass.

Simone spent a week in hospital in ICU as her oxygen levels fluctuated and she had a number of seizures. She was able to go home just before new year.

Over the next few months, whilst they waited for the first available appointment for surgery, Simone took medication to control any seizures and had regular memory assessments. She then had surgery which successfully removed 95 per cent of the tumour followed by radiotherapy and chemotherapy.

Amy in one of the Great Minds t-shirts that can be bought to support the Brain Tumour Charity

Sadly, Simone’s condition continued to deteriorate and, in April 2019, she moved into The Old Vicarage care home where she spent her final months before passing away in October with Amy, Martin and her sister Sonia by her side.

Amy said: “It was awful seeing mum go through such a difficult time. Her hair fell out and she lost so much weight that she didn’t even look like herself anymore. By the end of 2018, she went very downhill suddenly – she had a few falls, she struggled to walk on her own and she lost her short-term memory. It became so bad that we couldn’t leave her on her own - she was a hazard to herself as she was unstable on her feet and often wouldn’t know what she was doing.

“Dad and I became carers for her which, when I was only 21, was extremely difficult. We got help at home in the end, which we realise now should have come sooner, before she moved to the care home. I will forever be thankful to The Old Vicarage – they made us all feel so at home. We were able to enjoy time being a family again as well as have dinners together and even a birthday party for her. It was our second home.

“Mum’s memory was bad but she always knew who I was and she could still manage: ‘Goodbye Widge, love you' on even her worst days.”

Amy with her mum Simone

An estimated 86,000 people of all ages are living with a brain tumour in the UK today.

The Brain Tumour Charity’s Young Ambassadors help to raise awareness of this and what the charity does to help and support people affected as well as fund research into the disease.

Young ambassadors aged between 18 and 25-years-old are specially selected by charity representatives to take on the title for two years.

They represent the charity by sharing their stories, championing campaigns, attending events, supporting others affected by a diagnosis and helping to raise awareness of the organisation and the work it does to find a cure.

In addition, the programme gives young people valuable experience in developing new skills including social media promotion and public speaking as well as the opportunity to foster friendships with other people of their own age who have been affected by the disease.

Eve Kelleher, The Brain Tumour Charity’s head of services, said: “We are so proud to have Amy as one of our 21 new young ambassadors who play such a crucial role in helping us to raise awareness about brain tumours – the biggest cancer killer of children and adults under 40 in the UK.

“Since the two-year programme started in 2014, our young ambassadors have played a major role in helping us to shape our young adults service to best meet the needs of young adults and their families, whose lives have been turned upside down by a brain tumour diagnosis.

“Like their predecessors, our fourth group of young ambassadors will also advocate on behalf of young people affected by brain tumours and are passionate about working with us to give them a more hopeful future. Amy is no doubt going to be a powerful voice for the charity by sharing her story, campaigning and representing us at events to amplify our message that ‘A Cure Can’t Wait’.”

By becoming a young ambassador, Amy hopes to provide support for other young people affected by a brain tumour diagnosis and meet other people who know what it’s like to lose a loved one to this cruel disease.

She is also keen to fundraise so she is supporting the charity’s new organic cotton t-shirt range from Teemill that are emblazoned with the charity’s mission of ‘A Cure Can’t Wait’ to show support and help raise awareness in a simple and easy fashion.

Amy added: “I wish I had reached out to others more and talked about how hard things were for me. I used to be up during the night either worrying about mum or looking after her and then go to work the next day and act like everything was fine. I wish I knew then about the support The Brain Tumour Charity offers so I want to raise awareness of that.

“I really do hope that better treatments are found. I watched my mum be completely knocked down by the amount of treatment she had and yet she has still gone. I am thankful that the treatment she had gave it a good go but it stings so much that it didn’t work for her.”

Find out more about The Brain Tumour Charity, and how you can get your own Great Minds T-shirt here: https://thebraintumourcharityfashion.co.uk/.