Rett Syndrome and us

12/04/2026

Hi, not a usual post but I’m hoping the power of social media can help us 🙏🏼 would appreciate if you could share this so we can get some advice.

So it’s a long story but as we all know poppy has Rett syndrome, epilepsy and global developmental delay. Due to the nature of Rett syndrome poppy is very limited mobility wise, she relies on a wheelchair when out and about, if she’s in familiar surroundings she is more steady on her feet but falls multiple times a day. She can’t climb or use stairs purposefully. She’s completely non verbal, can’t communicate only through emotions. She weighs 27kg so we have to carry her up and down the stairs and in February we actually had an incident where she fell at the top of the stairs, knocking me down and I hit my head off the wall, luckily nobody was seriously harmed!

Anyway, we are having extreme difficulty due to our housing situation, we were originally in a 2 bed mid terraced house that was valued as not being able to be adapted, we were told by OT and the council that we would either have to find a house that is suitable for adaptation or already adapted.

In October 2025 we were given a house with all space for possible adaptions and this was always discussed through the whole process that poppy needs these adaptations everyone was on board (or so we thought) the HEART referral was put in place, they told us they don’t deal with under 18’s so all advisories were sent straight to capital projects we received the letter of next steps and waited. After a months we were told we’re on the waiting list ready for the adaptations to start.

We finally felt like we were getting somewhere.

4 days later I had a phone call from the housing officer saying “have you received your letter that all adaptations have been denied, we are going to have to find you an already adapted property suitable for poppy either through a management move or bidding” I still haven’t received this letter. I phoned capital projects again and they said they haven’t been denied but they’ve been advised to pause everything by the housing department. But we have been told again we will receive the letter and have to move. The housing department have basically said that we shouldn’t have been given the property and it’s on them but they don’t give properties out now that need major adaptations. So basically we are paying for somebody’s mistake.

The house we were given shouldn’t have been given to us at the time as there were 28 separate repairs that needed taking place. Whilst these were being carried out we were very cooperative, paid rent etc. we’ve now spent an upwards of £6,000 doing the house up (when I say it was given to us with blood splatters up the walls, I wish I was lying) and now they’re telling us that we’ve spent all that money for no reason and have to start all over again.

Also to add, when we did move in eventually in November it took 3 months for Poppy to settle as this was a massive change for her to deal with. It caused a major change in her behaviour, which was a traumatic time for all involved.

We feel completely let down and don’t know where we stand.

Do we have any rights here? Has anyone been through anything similar or recommend where we could get advice?

Thanks
Becky x

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! 🫶🏼