Poppy’s Life with RETT Syndrome

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Poppy’s Life with RETT Syndrome

Raising awareness and sharing our journey 💜

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! 🫶🏼

04/09/2024

Today Poppy went to the butterfly farm 🦋

30/08/2024

Start to the end of nursery 🍎

Poppy’s 2 years at nursery have been a rollercoaster and the ladies at ELC have been on it with us and for that I couldn’t be anymore grateful. Poppy has grew into such a beautiful little lady, still lighting up every room she walks into, everyone who meets Poppy falls inlove with her instantly but most of all she is determined to still be Poppy and not let rett take over!

Poppy’s next journey is going to a SEN school, with all different teachers and children, but I know she will absolutely thrive like she has at nursery, you amaze me everyday Poppy and for that I am ever so proud of you 🤍

Second photo I promise Poppy is happy, she has just had a long morning on the bouncy castle 🫶🏼

17/08/2024

Poppy’s fun day 🧚🏻‍♀️

So grateful for everyone that made it today, but especially the lovely ladies at Early Learning Camp who’ve given their Saturday up to make this all possible 🫶🏼

Poppy is one very loved little girl 🩷

13/08/2024

A reminder that poppy’s fun day is this Saturday 10am-1pm 🤍

Address

Coventry

Website

https://www.rettuk.org/, https://www.reverserett.org.uk/

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