Imogen was born with Canavans Disease. This account follows her story and that of her parents and sister.
London, England
Joined November 2017
- Tweets1.2K
- Following70
- Followers148
- Likes547
Dad and this wonderful mop of hair (attached to a certain Imogen Grace) are chilling with the Nfl on and candles lit.
It's beginning to feel very autumnal!
#CanavanDisease
#Disability
ImogensCanavanFight retweeted
I didn't want to share this, but I'm left with no choice when this individual lists a number of disabilities as if they are on menu at an all you can eat restaurant. Also, he throws in non-binary people and people of colour for good measure for the extra 'culture war cred'
Hey @BBCNews @surreylive @guardiannews
Can I bring to your attention a set of flats in #Kingston #London where there are three flats that keep breaking down and, today a disabled child had to call the fireservice.
#Disability
Big sister Brooke has entered the ballot to be an official @TeamGB mini mascot 👍
#CanavanDisease
#Disability
ImogensCanavanFight retweeted
We are thrilled to welcome new Patron @joeldommett - Joel has supported us for the last 6 years and recently spent time at our hospice meeting supported families. We know he'll be a fantastic advocate for our work. Welcome Joel➡️ loom.ly/nXoU-fY
The #ThamesHalfMarathon is 56 days away. Today Dad completed 10km.
All he's asking from you is to donate to the incredible @SSChospices and make the waddles worth it 😂👍
shootingstar.org.uk/donate/
Dad's away for two days and a tad emotional by it all.
Here's a video that helps him smile as Brooke plays the piano and Immy is content listening.
Bloody marvellous.
#CanavanDisease
#Disability
As Twitter/X becomes a breeding ground for far right and other nasties may we ask you to search for Imogen's story on either Instagram or Facebook.
Just search "Imogen's Fight" and you'll find us.
We have been posting less on here and this trend will continue.
#CanavanDisease
Dad's out waddling again.
Please donate to @SSChospices to support him 👍
#CanavanDisease
#Disability
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Help us with a video monitor, please!
#CanavanDisease
#Disability
This Post is from an account that no longer exists. Learn more
Dad and Big Sister Brooke were cutting, sawing and decimating the bushes in the garden.
Immy loved joining us whilst in her standing frame. She managed a good hour and a half in it before we came in for lunch.
#CanavanDisease
#Disability
Immys new bedroom is really starting to take shape!
Now, who wants to come and officially open it in a few weeks time?! No celebrity too big!!
#CanavanDisease
#Disability
A serious "Code Brown" this morning. Trying to help give Mum a much deserved lay in, Dad got up at 0740 as he heard Immy stirring.
He walked in to see a sea of... brown leaking from her nappy. It was everywhere.
He got her into the bath but Mum was already waking up and ended up dealing with changing bed linen. Antibiotics are not fun!!
#CanavanDisease
#Disability
Immy enjoining a nice cream at the weekend!
She's got a bit of a chest rasp, at the minute, so we're keeping an eye on that. And only two days left of school! 👍
#CanavanDisease
#Disability
ImogensCanavanFight retweeted
In this month’s @TWmagazines, Tristan talks about the difference that the Dads Who Care group, a community respite project run by Crossroads Care, has made to him and his family. Tristan cares for his 6-year-old daughter, Imogen, who has Canavan Disease. crossroadscarerk.org/its-goo…
As reported on @itvnews, this evening, Immy's school are fundraising for a new Inner Walk. This is a machine Immy uses to give her the sensation of walking.
They cost £45,000ish and if you can help with donations, please do.
gofund.me/752cc941
#CanavanDisease
#Disability
Here is Immy in the walker. It makes me (Dad) really emotional to see her walking, knowing that's not something she'll do on her own.
But it's important to show why children at @Bedelsford deserve another machine.
Dad, Auntie Jade and Uncle Joel (Dad's best mate) loved taking part in the @SSChospices Sunrise 10k Walk today.
An early start and we're home by 0730 but we've accomplished something and helped raised money for an incredible special cause.
#CanavanDisease
#Disability
ImogensCanavanFight retweeted
A beautiful day for our #SunriseWalk ☀️ Thank you to all our early risers (4.30am start 👏)
