Our Peggy 💗

To be honest, I’m not quite sure where to begin. Sharing this publicly is far from easy for us. We’ve always kept things about our girls close to our hearts and off social media. But life has shifted so drastically that staying quiet no longer feels right. What we’re walking through is deeply personal and painful but we’re reaching out.

Our beautiful girl Peggy, at just 6 months old, has already been through more than most of us will ever face. After a difficult stay in Kettering General Hospital, undergoing a series of invasive and exhausting tests, she’s been diagnosed with a rare lifelong condition called Tuberous Sclerosis Complex (TSC). It’s a genetic disorder that affects around 1 million people worldwide and causes benign tumours to grow in vital organs-such as the brain, heart, eyes, skin, and kidneys.

In Peggy’s case, the condition has already affected her brain. Though the tumours are not cancerous, they are just as extremely serious and life-altering. She is expected to live with severe epilepsy and may face significant learning difficulties as she grows. We’re also facing the possibility that these tumours may appear elsewhere in her little body.

The diagnosis has shattered us. There’s no easy way to accept that your baby has something growing on her brain-or that her future may look so very different than what you hoped.

But despite everything, Peggy continues to be a little light. She is cheeky, full of life, and so, so smiley. If you’ve ever met her, you’ll know exactly what I mean. She’s a ray of sunshine, even on the hardest days. She’s now on 12 medications a day, yet she beams her gorgeous smile through it all. She’s won over the hearts of the entire Skylark Ward staff team at KGH. Her consultant and the nursing team have been beyond incredible-we truly couldn’t ask for more compassionate care. We soon will be visiting and be under the care of Great Ormond Street too.

So why am I sharing all of this?

Because I want to do something. If our brave, joyful little girl can endure what she has with such resilience, I feel I owe it to her to try and give something back-to her and to the families walking a similar path.

That “something” is running a half marathon.

Yes, this chubby mumma is lacing up her trainers (pray for my knees!) and running Bedford’s Half Marathon in February to raise awareness and funds for the Tuberous Sclerosis Association-a charity working hard to support families like ours, raise awareness, and fund research into this complex condition.

If you feel able to donate, it would mean the world to us. I know times are hard for many, so even if you can’t contribute financially, please keep Peggy in your thoughts and prayers. And if you fancy a joining me on the run or coming to cheer me on-I’d love that too. The more runners, the more awareness. The more support, the more strength to get over that finish line. (Please do get in contact if you fancy a run for our gorgeous girl or to cheer us on from the sidelines lines)

Thank you so much for reading, for caring, and for walking with us on this uncertain road. We’re incredibly grateful for every bit of love, support, and kindness.

With love,

Tom, Emily, Margot-Maeve and Peggy 🩷