I am doing the Kingston Half Marathon in October to help raise funds for Fanconi Hope - a small charity that supports my dear friends Chris and Hannah and their amazing triplets.

I am not a natural athlete by any stretch of the imagination, but in the last few years I have got into more regular running and am looking forward to the challenge.

Chris and Hannah’s incredible story, in their own words, is below. They are the best of the best and the kids are very, very special indeed. Please read and donate if you can. Thank you.

Chris

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It was a huge surprise when we found out we were expecting spontaneous triplets in April 2023. Alba, Ava, and Emil were born at just over 3lbs each on the 1st November 2023, two months earlier than planned. They spent 5 weeks in NICU and did amazingly well, so much so that we felt fortunate that we had come through the most difficult days and were so pleased to have them home.

After a few weeks, it became clear that Emil was having huge feeding problems, and we ended up back in hospital in February 2024 because he had stopped eating after a virus. While the girls had gained weight, his weight had plateaued. In May ‘24, his heart consultant suggested we do genetic testing as he suspected Emil may have had a skeletal dysplasia condition. This wasn’t the case, but last September we received a heartbreaking and devastating diagnosis that Emil has a condition called Fanconi Anemia (FA). It is a very rare blood disorder.

The condition is quite significantly life-limiting, and while it is likely to cause bone marrow failure that would require transplant in childhood, it also puts Emil at huge risk of cancer (around 500 -700 times more likely than those who don’t have the condition).

We waited several months to get the girls tested, as they weren’t displaying symptoms in the same way as Emil, and we hoped for the best. But in February of this year, we found out they also have the same condition.

The diagnosis of FA has turned our lives upside down. Along with the day to day chaos of looking after three toddlers, we now carry a huge weight of wondering what the future is going to look like for them, and for us as a family. There is so much uncertainty with this condition, and so many ‘ifs’ and ‘buts’. All we are able to do is to take each day as it comes, not think too far ahead as it is too overwhelming to contemplate or comprehend, and hope with all our hearts that medical science continues to advance to help them at some point in the future.

Fanconi Hope is a small charity that was, coincidentally, set up by a local family whose daughter, Louise, was diagnosed with FA more than 20 years ago. The problem with many rare conditions is they are often underfunded, and therefore there is limited information out there to help people. Fanconi Hope have made some big steps already to help promote the condition, and along with a charity in the US (Fanconi Cancer Foundation), they have put money into research and raising awareness to gradually improve the outcomes of people living with FA. Children with Fanconi Anemia were very rarely able to live beyond the age of 18 years old, but are now able to live into their thirties, and beyond. They also hold family weekends, so we are able to connect with others who are living through this, and provide mental health support to families across the UK.

So it’s a plea from us as a family to donate to Fanconi Hope. It does make such a difference to research, and to bettering the lives of children who have been affected by this cruel condition.

Thank you for taking the time to read our story.

Hannah and Chris x