13/09/2025
WHY SEPTEMBER 13TH WILL ALWAYS BE MY LUCKY DAY 💛 SPINA BIFIDA PREVENTION
(Please note this is nothing to do with my decorations, it’s about my childhood with spina bifida so no obligation to read it)
In the picture below you can see me & my dad in our living room back in 1991!! In it I am plastered up in a three quarter body cast that I spent 13 weeks in when I was 8 years old. I’m in it because I’d had major spinal surgery to treat an aspect of my spina bifida that would have otherwise paralysed me, and they wanted to immobilise me to allow it to recover. The surgery itself was actually carried out on Friday 13th so I don’t fear the day that’s unlucky for some!! I remember all the medical treatment very well including when I was wrapped into the plaster cast like a mummy and when I was drilled out of it. During my 13 weeks in plaster my bed had been brought downstairs and I could only lie on my front or back and I had to be turned every couple of hours. It’s the only time in my life when you could describe me as “weighing a ton!” I had an at home teacher but I was a smart Alec and a show off 🤷🏻♀️ and I thought the work was too easy for me so I messed about 😂 My friends visited me a lot and my aunties came round when my mum and dad went to work - they painted my nails and made me chocolate hedgehogs!! My little sister Holly was always there to play with me and my mum and dad took it in turns each night to sleep downstairs on the sofa so I was never on my own 🩷 When I finally came out of the plaster cast my legs had gone to sleep but luckily the nerves still worked so I was able to learn to walk again. It was hard, painful physiotherapy but it didn’t take too long and I went back to school in the January with my crutches and a little mini plaster jacket to protect me. I wasn’t allowed to go outside for playtime for a few months.
My mum and me often have the same conversation each September 13th - thank goodness the surgery worked and I got 15 more years on my legs with my health before it sadly declined when I was 23. Yes I’ve always lived with chronic pain and my body was smaller than it should of been, I couldn’t walk as fast as everybody else, and I couldn’t lift anything very heavy. But I’m soooo glad I got those 15 years on my legs, and for all of the things I got to do - trips to Disneyworld where I could hop, skip and dance about, I got to play with my new baby brother with my full mobility, I went to school, college, university as normal - I raved with my friends when I was young and daft, I travelled extensively which is what I was doing when I declined but I loved my 6 months working as an English teacher in Thailand, I wouldn’t change any of what I did - I was a wild free spirit and I loved life!!
When you’ve been a paediatric patient for your whole life you grow up with the understanding things don’t always work out medically for people so I knew to make the most of what I had. I couldn’t of predicted the level of destruction my malformed spine would cause from age 23 but I’m glad I can say that I still have given life my best shot even though the deck is stacked against me, I’m very proud that I still see the beauty in the world 🤩
💛 SPINA BIFIDA PREVENTION 💛
This is the real reason I wanted to share my September 13th story with you …
It’s important to say that everybody’s life with spina bifida is different, we will all have our individual medical stories and perspectives on what it’s like to live with the conditions it causes. There is though only one way currently to prevent spina bifida and that’s with FOLIC ACID TAKEN BY THE WOMAN AT THE CORRECT TIME OF PREGNANCY - IDEALLY BEFORE YOU GET PREGNANT!!
Spina bifida is a neural tube defect (NTD) so the whole of your brain and spine can be affected. It occurs within 27 days of conception, so very early on, which is why the folic acid needs to already be in your body.
72% of cases of spina bifida can be prevented with folic acid use - a simple B Vitamin.
Please educate your children about this particularly your daughters. Not enough is said about NTD prevention and it’s important. All of my beloved nephews are folic acid babies and as far as we know it’s prevented the spina bifida. I want them to be able to give life their best without continually dealing with health issues 🩵🩵🩵🩵
(Now let’s just take a moment to look at that hideous early 90s decor!!).
