'This could be my last Christmas after diagnosis which started with dry cough'

Fiona Hinton, 42, began experiencing breathlessness and a dry cough in 2017, which turned out to be early signs of pulmonary fibrosis - she fears her two-year-old son won't remember her

A mum with a terminal lung condition has spoken of her heartbreak at the thought her two year old son may not remember her. Fiona Hinton, 42, from Poynton, Cheshire, was diagnosed with pulmonary fibrosis in 2019 - a rare and incurable condition that progressively scars the lungs and makes breathing difficult.

After undergoing IVF with her husband Alan, 42, following his recovery from stage four cancer, they unexpectedly conceived naturally in 2022. Their son Harry was born in October of that year.

In 2023, Fiona was told she may have just two years to live without a transplant. Despite the devastating news, Fiona says 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.

In a heart-wrenching admission, Fiona shared: "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'."

She went on, her voice heavy with emotion, "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."

The 35 year old's life took a dramatic turn in 2017 when a relentless dry cough and breathlessness after mild activities like climbing stairs began to plague her. Having initially brushed it off thinking she "must be really unfit", Fiona attempted to kick up her fitness regime only to find her symptoms stubbornly persistent.

Her struggles escalated with episodes of dizziness and overwhelming tiredness. Eventually, in November 2019, at aged 37, Fiona received a grim diagnosis—terminal pulmonary fibrosis.

With no known cause for her condition, which doctors have ruled as non-genetic, she resignedly noted: "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."

Fiona said she feels "blessed" to have a "close-knit" support system of friends and family, including her husband, who stood by her side. Between 2017 and 2021, Fiona and her husband Alan faced the tribulations of IVF using frozen sperm.

After five unsuccessful attempts and one heartbreaking miscarriage, they ceased their efforts in 2021. Yet fate took an unexpected turn in May 2022, when Fiona found herself pregnant at 13 weeks.

"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," she revealed. The couple were overjoyed, with Fiona describing the scan the day after as one of the most astonishing moments of her life.

Despite a difficult pregnancy where she was battling breathlessness and eventually needed a wheelchair and higher oxygen levels, the October 2022 C-section birth went well. However, Fiona's challenges continued as she battled postnatal depression, finding solace and support from the charity Action for Pulmonary Fibrosis.

Fiona shared: "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 their assistance, Fiona feels that her son, Harry, has brought happiness into her everyday life. "He's transformed our lives in a way that I can't really articulate – he's the light of our lives," she expressed.

"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! " On a daily basis, Fiona remains physically drained, struggles to breathe, and must be cautious about avoiding colds and infections. Despite her challenges, she believes her illness has deepened her appreciation for her loved ones and helped her understand there is life after a terminal diagnosis.

Last year, Fiona was informed her life expectancy is two years, leaving her unsure if this Christmas will be her last. This Christmas is set to be extra special for a mum who is determined to make it memorable for her family. Fiona and her family have already had breakfast with Santa and are planning to spend as much quality time together as possible.

"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," she shared. For Fiona, it's all about creating lasting memories, supported by her relentlessly positive husband.

Yet, she can't shake off the worry that her young son might not remember her as he grows up. Due to his tender age, having a meaningful conversation about her condition or the significance of this Christmas is challenging.

Currently, Fiona is on the lung transplant list, hoping for a match that could extend her life. In 2022, NHS Blood and Transplant service reported that on average, 83 out of 100 people live for a year post-lung transplant, while 55 out of 100 survive for five years.

Fiona advises other parents battling terminal illnesses to seek help. She 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 is a charity that supports anyone affected by pulmonary fibrosis. In addition to providing support, the charity also funds crucial new research to improve our understanding of the disease, which could potentially lead to new treatments in the future.

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