Together for Short Lives: Harrogate woman's speech to room including Simon Cowell, Mason Mount and Lulu

Last week, Manraj gave a keynote speech at the Together for Short Lives charity ball at the Grosvenor House Hotel in London and was introduced to the stage by The X Factor host Mr Cowell, who is the charity’s patron. Other well-known guests at the ceremony included Manchester United footballer Mason Mount and broadcaster Vanessa Feltz, while the audience was treated to an after-dinner performance by soon-to-retire Lulu.

Guests were moved to tears by Manraj’s speech about Arjun, who suffered a brain haemorrhage at birth and died aged 17 on February 14, 2020. She spoke about the challenges she faced in being Arjun’s advocate and coordinating his care, working a full-time job and raising her two other children, all while knowing Arjun would die young.

Manraj says: "I’m privileged to be an ambassador for Together for Short Lives and Martin House as both were vital to my family throughout Arjun’s life. It’s important that we highlight the 24/7 end of life care organisations like these provide, but unfortunately, not all families can access it in the way we did. Services are now highly dependent on where families live, meaning vulnerable children and their families can struggle to get the care they desperately need”.

“Arjun will always be my inspiration and motivation, and to honour his memory I’m fighting to ensure families like mine can access the right care.

"Meeting and talking to public figures with huge reach at this high-profile event was a once in a lifetime opportunity to raise awareness and much-needed funds.”

Arjun spent the first three months of his life in special care baby units. When his family took him home, “we knew time with him would be short – but nothing could prepare us for the rollercoaster of emotions that come with trying to maintain a normal family life, whilst terrified we could lose our precious son at any moment,” says Manraj.

“He was four years old when his body started violently shaking. These debilitating seizures resulted in regular emergency visits to the hospital and became so frequent that he could not be left alone for any length of time.

"Emergency medication and a speed dial to our local hospice was vital. Arjun required round the clock care. It was a full-time job coordinating appointments, making endless phone calls and understanding paperwork.

"The number of services involved in Arjun’s care was truly bewildering. For families like mine, Together for Short Lives is there, when it can feel like there is nowhere else to turn and nobody understands.”

Manraj, 47, has spoken at the House of Commons and was an Asian Woman Awards finalist for her charity work.

She is now learning to live with grief while blogging about her experiences through her Instagram account, Northern Bindi.

But she aims to use her experiences to help other women survive trauma and the challenges of midlife, and is keen to speak to others about palliative care funding and advocacy for patients and families.

Manraj balances her campaigning with her day job as a secondary school teacher and National Education Union representative, as well as raising her two teenage daughters.

Together for Short Lives provides families of seriously ill children with emotional, financial and practical support and advice.

Mr Cowell – known for being a judge on shows such as The X Factor and Britain’s Got Talent – became a patron of the charity in 2009.

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In a statement put out by the charity, he said: “One of the biggest lessons I’ve learnt from my time as Patron of Together for Short Lives is that time, no matter how long or short it may be, is the most precious thing. For the families of seriously ill children, they have to take each day as it comes, because they often don’t know what tomorrow will bring. For them, every moment is a gift.”

Manraj shares her journey using the Instagram handle @northernbindi