Terminally ill mum fears son, 2, will not remember her as this 'may be her last' Christmas

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A mother with a terminal lung condition fears her two-year-old son may not remember her, as she worries this Christmas may be her last.

Fiona Hinton, 42, from Poynton, Cheshire, was diagnosed with pulmonary fibrosis, an incurable illness which progressively scars the lungs and worsens breathing, in 2019.

In a devastating blow, she was told in October 2023 that she may have just two years to live without a lung transplant.

She now fears for her son Harry being too young to have memories of her, but is firmly focused on making lasting memories with her loved ones this Christmas.

Fiona, a global data ingress manager, experienced symptoms including breathlessness and a dry cough for two years before her diagnosis.

As she was becoming breathless after minimal activity, she was originally concerned about being "really unfit", but her condition did not change despite exercising more to improve her fitness. She also began experiencing lightheadedness and extreme fatigue before being diagnosed with pulmonary fibrosis at the age of 37, which the NHS says is rare in people under the age of 50.

Although doctors cannot determine a cause for her condition, they have confirmed it is not genetic. She said: "It is a case of bad luck.

“I remember getting out of the hospital, my mum and dad had waited for me, and I just cried and cried in the car, and I was like, ‘I don’t understand, I’m 37 and I’m dying’. It was a lot to process. Having to face your own mortality is its own special experience, particularly when you’re younger. It felt like I was losing the opportunity to live essentially, it was a tough pill to swallow.”

A beacon of hope has been two-year-old Harry, who Fiona said has given her "a reason to live" and made her "fight harder" to be around for as long as possible.

Between 2017 and 2021, Fiona and her husband Alan, 42, underwent IVF using Alan's frozen sperm after he had stage four cancer in his twenties, from which he has since made a recovery. Following five unsuccessful rounds and a miscarriage, they unexpectedly conceived naturally in 2022, with Fiona giving birth to Harry that October.

While Fiona has said the thought her son might not remember her is “heartbreaking”, she believes Harry has given her “hope” and she is focused on creating lasting memories with her family this Christmas, while remaining hopeful for a lung donor match.

However, she finds it tough that she is unable to explain her illness to him because of his young age, or have a meaningful conversation about how important this Christmas is to her.

Fiona tearfully said: “Harry brings us so much joy … he has given me hope, and a reason to live in a way, in that you feel quite bleak when you’re in a terminal illness situation, and having Harry has made me fight harder to be fitter, to try and stay around as long as I can. But I think ‘you’re not going to remember me, you’re not going to know who I am’.

“I find that hard because we waited for him for so long and I love him so much that the thought that he won’t remember me or won’t really understand is quite heartbreaking. I don’t think he’ll know me … but I enjoy him being an innocent, happy little soul and every day is fun for him.”

Finding out she was pregnant with Harry at 13-weeks was a surprise, but a memory she treasures.

She said: “I never believed, honestly, that people could get pregnant and not know about it, but that is what happened to me, and it was just an incredible miracle.

“We couldn’t believe it. I had a scan the next day and that will forever be one of the most amazing moments in my life.”

Fiona's condition affected her more during her pregnancy, with increased breathlessness and eventually needing a wheelchair and higher oxygen levels towards the end. Following Harry's birth by Caesarean section in October 2022, Fiona reached out to charity Action for Pulmonary Fibrosis after struggling with postnatal depression.

She said: “I wish I knew about Action for Pulmonary Fibrosis sooner. I was in the depths of despair and I phoned their support line, and I got through to a lady called Chloe, who was just wonderful. She was so kind and just understood it and was practically helpful as well. I started having people come to help me in the house, and it took all the burden away and gave me a sliver of hope in a time where I was really feeling quite bleak and desperate.”

With the support of the charity, and her network of family and friends, Fiona has realised the joy Harry has brought into her life, and boosted her appreciation for her loved ones.

She explained: "He’s transformed our lives in a way that I can’t really articulate – he’s the light of our lives. It’s hard work, but we love him to pieces.

“I think with babies, you can’t help but be in the moment with them, because they need you right now. It made me realise there’s no point worrying about what comes next, because I’ve got to deal with him throwing his toast around after me cutting it up into little pieces!”

Despite continuing to face daily exhaustion and breathing difficulties, and being wary to prevent picking up colds and infections, she is determined to make this Christmas as special as possible while hoping for a lung donor match to extend her life. Her family has prioritised spending quality time together, and has already enjoyed having breakfast with Santa.

Fiona said: “This year in particular is emotional for me and I don’t know if it’ll be my last Christmas, and with Harry, it doubles the poignancy. It’s all about making memories, and that’s what we tend to focus on – my husband is relentlessly positive.”

She has advised other parents living with a terminal illness to reach out for help, and encouraged others to join the organ donor register if willing.

She added: “Speaking to a charity such as Action for Pulmonary Fibrosis was amazing – they were and still are a lifeline for me. “I would also encourage anyone to share their wishes with their loved ones if they are willing to become an organ donor. It’s lifesaving.”

The NHS Blood and Transplant service reported in 2022 that on average, 83 out of 100 people live for one year, and 55 out of 100 live for five years, following a lung transplant.

Action for Pulmonary Fibrosis supports anyone affected by pulmonary fibrosis. The charity also funds vital new research to help improve our understanding of the disease that could help lead to new treatments in the future.

For more information visit: www.actionpf.org, and for support call 01223 785725 or email supportline@actionpf.org.

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