Mum faces 'last Christmas' as she may not be alive next year

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, following his recovery from stage four cancer, they unexpectedly conceived naturally in 2022 and welcomed their son Harry. However, in 2023, Fiona was given the devastating news she may have just two years to live without a transplant.

Despite this, she remains hopeful for a lung donor match and is focused on creating lasting memories with her family this Christmas.

Fiona, with tears in her eyes, 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'."

"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."

At 35 years old, back in 2017, Fiona began to suffer from a persistent dry cough and felt breathless after minimal activities like climbing stairs. Initially dismissing it as a sign of poor fitness, she increased her exercise routine but saw no improvement in her condition.

As time went on, Fiona also started experiencing light-headedness and extreme fatigue. It wasn't until November 2019, at age 37, that she received a diagnosis of terminal pulmonary fibrosis.

The cause of her condition remains unknown – doctors have confirmed it's idiopathic and not genetic. Fiona expressed her feelings about the diagnosis, saying: "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 feels "blessed" to have a "close-knit" group of friends, family and her husband, who supported her through that time, and continue to do so. Between 2017 and 2021, Fiona and Alan underwent IVF. Using Alan's frozen sperm, they endured five failed rounds and one miscarriage before deciding to stop trying in 2021.

However, in May 2022, Fiona discovered she was 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," Fiona explained.

"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, near the end, required a wheelchair and higher oxygen levels. While the birth by Caesarian section in October 2022 went smoothly, Fiona struggled with postnatal depression and received 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 an extra special one for Fiona and her family, as they've 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, buoyed by her husband's unwavering positivity. 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 remains on the lung transplant list, hopeful for a match that could extend her life.

According to 2022 data from the NHS Blood and Transplant service, on average, 83 out of 100 people live for a year post-lung transplant, while 55 out of 100 survive for five years. To other parents battling terminal illnesses, Fiona recommends seeking support.

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.