Running for Ella 💜

In April 2027, I’ll be taking on the huge challenge of running the 10th anniversary edition of the London Landmarks Half Marathon for my daughter, Ella.

I haven’t run long distance properly in around 10 years. Ten years ago, I ran the London Marathon and now I’m dusting off the trainers and putting my mind over matter again, because this time I have the biggest reason of all. Ella. Ella was born prematurely at 36 weeks and spent the first seven weeks of her life in NICU. From the very beginning, we knew she was going to need more support than most babies.

She was tube-fed from birth and needed months of intensive tube-weaning and feeding support. She has since been diagnosed with an incredibly rare genetic condition involving the CSDE1 gene, with only a very small number of known cases worldwide.

Her development, growth, feeding, hearing and physical abilities are all significantly affected, and because so little is known about her genetic condition, there simply isn’t a clear roadmap for us to follow.

We work with a huge number of NHS specialists, including:

• Occupational Therapy

• Physiotherapy

• Orthoptics

• Neurology

• Genetics

• Audiology

• Endocrinology

But we have also had to turn to private specialists to access the intensive support Ella needs.

Over the past year, we have funded:

• Tube-weaning support – around £500

• CST and reflux therapy – around £1,000

• Lactation/oral-motor support in London, travelling every two weeks

• Private physiotherapy – around £600 every month

• Additional specialist therapies and equipment

Ella also has significant hearing difficulties. She currently is awaiting bone-conduction hearing aids, as she is too small to safely undergo surgery for grommets and her doctors have concerns about the risks associated with operating on her at her current size.

We are also currently waiting for a PEG feeding pathway, so her specialists can establish whether her extremely limited appetite and calorie intake are contributing to her very poor growth.

If improving her nutrition doesn’t allow her to grow adequately, we have been told that growth hormone treatment may need to be considered long-term, which consist of daily injections with comes with risk of inflammation which is dangerous with fluid already in the brain.

And we are not stopping there.

In February 2027, Ella is due to attend a three-week NAPA intensive, involving three hours of therapy every day, including physiotherapy, occupational therapy and speech and language therapy.

It costs around £6,500.

Her private physiotherapy alone costs around £600 every month, before we even consider the other therapies, specialist appointments, travel and equipment she needs.

I am constantly researching, learning and looking for anything that could give Ella another opportunity.

I have found specialists around the world doing incredible work with children with neurological differences, including Dr Melillo in New York, and I would love to explore intensive programmes and therapies that may be able to help Ella in the future.

Why am I doing this?

I’ll be honest this year has been incredibly difficult.

I have never experienced mental health problems before, but everything surrounding Ella has been traumatic. I find myself constantly explaining her story, dealing with comments when we are out such as “oh, look at the newborn”, and finding social situations incredibly difficult.

Every run can become a time when my mind spirals but I’m hoping that training will give me something positive to focus just like Ella does every single day because if Ella has to work this hard, so do I.

I don’t want to look back in years to come and wonder whether we could have tried something else for her. Ella is believed to be the only babe currently known to us with her particular CSDE1 genetic diagnosis, meaning there is very little existing knowledge about what her future might look like. 25 diagnosed world wide over 4, We are often told to take a “watch and wait” approach, but as her mum, I feel strongly that where there are therapies, specialists and opportunities that could potentially help her, I want to give her access to them. Early intervention matters. But unfortunately, accessing that level of support comes at a huge financial cost.

Every donation, no matter how big or small, will help us fund the therapies, specialist support, equipment and intensive programmes that we hope will give Ella the best possible chance to reach her potential.

And if you can’t donate, simply sharing Ella’s story means more than you know if anyone else would love to do any fundraising events for Ella please also reach out.

Ten years after running the London Marathon, I’ll be back on the streets of London, this time, I’ll be running for my little girl.

Thank you for supporting our little girl.