Leona O'Neill: Derry girl Alexandra Johnston's light will shine on, a beacon of hope

Co Derry teenager Alexandra Johnston succumbed to a deadly form cancer last week after having battled it for years. In her short life she was a true force of nature and an inspiration to people who had the privilege to know her – including me, writes Leona O'Neill

Claudy girl Alexandra Johnston celebrated her 16th birthday on New Year's Day

ON THURSDAY afternoon I heard the sad news that young Alexandra Johnston had passed away. The Claudy teenager had been battling cancer for almost five years. I’m not ashamed to say I shed a tear for the loss of this remarkable young woman who, since being told in 2013 that she only had three months to live, kept astounding her doctors with her determination to live.

I first met Alexandra when she was 13 years old. She had been diagnosed with Ewings Sarcoma Cancer just the year before. She was near in age to my oldest son and, despite the fact that her life revolved around hospitals and chemo treatments and battling to stay alive, she was a typical teenager.

She loved make-up and nails and One Direction. She documented her life on social media like every other teen, always smiling and planning for the future, despite having what was essentially a death sentence hanging over her head. Her parents Andre and Karen, who faced the most heartbreaking, crushing and unimaginable pain of one day having to say goodbye to their daughter, said that her positivity, her energy, her vivacious and effervescent personality picked them up off the floor many, many times.

I often came home thinking myself so lucky that, as a mother, I did not have to face the dire and uncertain road ahead of navigating chemotherapy, radiotherapy, hospital tests, scans and appointments that would determine their future.

I spoke with Alexandra just two weeks ago as she got ready for her 16th birthday, a day she was told by doctors she would never see. I had run a story about her wanting to break the world record for the number of birthday cards one person can receive. Her postman delivered thousands of cards from all over the world, from strangers wishing her well.

As she painted her nails she told me that this birthday was really special.

“I’ve always thought that people should make a big deal of their 16th birthday,” she told me. “I think it’s even more special for me because four years ago we were told that I wouldn’t make my 12th birthday, so to reach my 16th birthday is a big, big thing in this house.”

Just days after her big birthday bash she became ill and was rushed to the Royal Belfast Hospital for Sick Children in Belfast where she died last Thursday morning surrounded, as always, by her adoring family.

A light has most certainly gone out, for this extraordinary young woman lit up any room she entered and shone her brightness into dark places where people had given up hope.

She stood tall and proud as a person who was daily beating all odds with a big smile on her face. She was a tough cookie with the sweetest smile and the finest example of how life with illness can have no barriers.

I spoke with Alexandra and her family many times over the years. I spoke with them when she was enduring her 100 bouts of chemotherapy. I spoke with them when she was made an honorary member of a Northern Irish bikers gang, and when she met her idol Ryan Hurst from Sons of Anarchy. I spoke with them when they were caught up in the horrific Spanish terror attacks last year while they were on a holiday of a lifetime trying to make special memories with her.

And every time I put down the phone I felt inspired, I felt determined to make the very best out of this life, I felt like I should go and hug my children tighter because life is so precious and nothing is promised. And I felt stronger, because if Alexandra – a mere girl of 16 – could battle the raging, cruel, merciless and terrifying beast that is cancer and fend it off for years against all odds then I could cope with anything life threw at me.

As a mother I can not imagine what her parents are going through. To lose a child on the cusp of her adult life, with so much promise, so much life and love within her is surely to be crushing.

Her father Andre described her as "the most amazing inspirational brave and talented young lady" who he said was "shining amongst the stars". And so she is. And so she will most certainly continue to do, shining her light from above and be a bright beacon of hope in the darkness.

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