Mum, 42, who 'thought she was unfit faces last Christmas' after rare diagnosis

A mum who 'thought she was unfit' is facing what could be her last Christmas after being diagnosed with a rare condition. Fiona Hinton started exercising more after developing a persistent dry cough and feeling breathless after little activity.

But her symptoms did not improve and she soon started to feel light-headed and extremely fatigued. The 42-year-old has since been told she has pulmonary fibrosis - a terminal lung condition.

It is an incurable condition which progressively scars the lungs and makes breathing difficult. It is rare for those under 50, according to the NHS.

READ MORE: Prince Harry 'sends telling message to King Charles in Christmas card'

Don't miss the biggest and breaking stories by signing up to the BirminghamLive newsletter here.

Last year, Fiona was told her life expectancy is two years, leaving her uncertain if this Christmas will be her last. She said the possibility that her two-year-old son Harry might not remember her is 'heartbreaking'.

But she is determined to make this Christmas as special as possible. 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." Fiona began experiencing breathlessness after minimal activity, such as climbing stairs, and a dry cough in 2017.

Initially, she thought she 'must be really unfit' but despite exercising more, her condition did not change. She later experienced light-headedness and extreme fatigue.

In November 2019, she was diagnosed with pulmonary fibrosis at the age of 37. Her condition is idiopathic, which means that doctors do not know the cause but have confirmed it is not genetic.

Fiona, a global data ingress manager from Poynton, Cheshire, 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."

Between 2017 and 2021, Fiona and her 42-year-old husband Alan underwent IVF. Teacher Alan had stage four cancer in his twenties and has since recovered.

After five failed rounds and a miscarriage, they unexpectedly conceived naturally in 2022. Fiona gave birth to their son Harry, now two, by Caesarian section in October 2022.

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."

Her pregnancy was challenging - she felt even more breathless and required a wheelchair and higher oxygen levels. She also struggled with postnatal depression and received support from the charity Action for Pulmonary Fibrosis.

Fiona 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." In 2023, Fiona was told she may have just two years to live without a transplant.

But she said her son has given her 'hope' and she remains hopeful for a lung donor match. Fiona 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." She added: "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!" Day to day, Fiona remains physically exhausted, struggles to breathe, and must be vigilant about avoiding colds and infections.

Fiona said she feels 'blessed' to have a 'close-knit' group of family and friends. In 2022, the NHS Blood and Transplant service reported that on average 83 people out of 100 live for one year after a lung transplant and 55 people out of 100 live for five years after a lung transplant.

Fiona said: "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."

Action for Pulmonary Fibrosis supports anyone affected by pulmonary fibrosis. The charity also funds research to improve understanding of the disease that could lead to new treatments. For more information visit: www.actionpf.org, and for support call 01223 785725 or email supportline@actionpf.org.