Rett Syndrome and us

11/02/2026

Poppy’s dad Taylor is running in the London Marathon to raise money for Rett UK

Rett UK gives continuous support to families affected by Rett syndrome and are such a friendly, warm and welcoming charity! They have supported me through the past 2.5 years of Poppy’s diagnosis, pointing me in the right directions and helping me get the best for Poppy.

If you have any spare cash, taylor would be grateful if you could donate and get him to his target.

Thank you 💜

About us The London Marathon has become an annual, inspiring and colourful fixture in the world’s sporting calendar since the inaugural race on 29 March 1981: a celebration of fun, fundraising and fan

10/02/2026

Hey everyone, long time no speak 💜

It’s been almost a year since I posted on here and what a year it has been! Poppy’s now a proud big sister to little Lottie, at first she loved her, then went through a stage of “oh wait she’s actually staying” to now she adores her and completely interactive with her!

We’ve also moved house, the amount of blood sweat and tears that has gone into making that house a home is ridiculous! Now we are waiting for the adaption works to be approved/denied so then we will know where we stand and wether we have to move again or try and self fund it..

What a long process it is, someone said to me once “I bet they the local authority really look after you” and my reply was do they b*llocks, unfortunately we aren’t the only family that will reply this either! For the past 2.5 years they’ve sent me on a wild goose chase, telling me to do this and that, then when I do what they ask it’s all changed again and I need to do something else. They don’t care that much that when I’ve explained to them Poppy’s 27kg and we are still having to carry her up and down the stairs and that I’ve almost dropped her or fell down the stairs with her in my arms a handful of times, they almost don’t reply 🤣

There’s a little bit of a life update for you, apart from that we are doing great, Poppy’s loving school as always and everyone in the school knows her apparently.. no shock!

Love becky x

12/04/2025

To some it will just look like a little girl banging a drum..

To someone who’s life is effected by Rett syndrome it’s much more. Poppy doesn’t have complete use of her hands, she can often struggle to do simple things we all take for granted like using her hands to have a drink or eat, and doesn’t have purposeful hand movements. But wow that banging on the drum is so heartwarming and brings me back to real life, over all the medical needs and horrible things poppy faces daily, she’s still just a 4 year old thriving off of making a racket 🤣

Her big smile just shows how proud she is of herself because unfortunately she is starting to understand that she can’t do a lot of what her peers do and gets so frustrated..

I will always be so proud of my little girl 💜

26/03/2025

How amazing, jacks still got a couple days of running left until he’s completed his mammoth challenge and he’s managed to raise over £5,000 for Rett UK

We all can’t thank you enough for doing such an amazing thing for an amazing cause! Well done Jack, keep pushing through! 👏

10/03/2025

Big shoutout to one of poppy’s dad’s friends for running the length of the UK to raise money for Rett UK in the honour of our very own Poppy! To follow his journey he’s documenting it on TikTok, give him a follow and show your support!

I’ve attached the link to his go fund me if anyone would like to donate 💜

https://www.justgiving.com/page/jackrettrun?utm_medium=FR&utm_source=CL

10/12/2024

Hello everyone,
We have been very quiet on here for a few months, we unfortunately lost a big part of our family in September ‘uncle biz’. He was one of Poppy’s uncles who loved her so dearly, he cherished the ground she walked on and was so proud of her like the rest of her amazing family.

On a lighter note, poppy has been doing absolutely amazing at school, she’s goes to school with a huge smile on her face and comes home absolutely exhausted, but everyone there loves her (we knew this would happen anyway).

30/09/2024

October is Rett syndrome awareness month 💜

12/09/2024

Poppy has done 2 days at school, both days she’s come out with a great big smile on her face! She has been telling us in her own way what she does and doesn’t want on her dinner, she has hardly cried all week and seems so content. She’s also started playing with her favourite toy at home again! Hoping this isn’t a fluke and things are starting to look up for our beautiful girl!

We also had an appointment with wheelchair services and unexpectedly we got given a wheelchair the same day, so we now have a wheelchair which gives her so much support.. 🤍

10/09/2024

Poppy’s first day at school 🍎✏️

I can’t believe how fast the past 4 years have gone, from my little 6lb 4oz baby to my beautiful little girl. Today is the start of you showing the world just how amazing you are and just why everyone adores you so much. I know you will brighten the room with the great big smile and contagious laugh of yours.

06/09/2024

After about an hour of building it we finally have a specialist buggy that poppy feels comfortable in, thank you to everyone that donated! We are just waiting to get the specialist car seat now too! 🫶🏼