This month we are sharing about Canavan Disease 💙
For condition information please visit: https://alextlc.org/condition/canavan-disease/
We support all leukodystrophies - for support email info@alextlc.org
#AlexTLC #CanavanDisease #VanBogaert-BertrandDisease
#NORDSummit: Lee Greenwood, whose 5-year-old daughter Noa was born with #CanavanDisease, a severe #GeneticDisorder found mainly among Ashkenazi Jews. In June 2022, the girl received lifesaving #GeneTherapy and is now developing normally.
@nordrare.bsky.social
#RareDisease #RareSky #MedSky
Due to my daughter being sore / healing from surgery we are using her hoist more. She's non mobile, non verbal so the hoist takes away any stress on my back but we listen out to positive happy noises from her.
And she ruddy loves using it!
#CanavanDisease
#Disability
Yes, the wife and I are worried having her home so soon (we were told she'd be in for two to three weeks), but having her home and healthy is incredible.
Our NHS is truly an amazing thing.
Now I need to see if the titanium rods have any magnetism to them 😂
#CanavanDisease
#Disability
One week and one day any my daughter is already home!!
She's incredible!!
Two growth rods are now running alongside her spine but the doctors stated they were not having to undertake any intervention and it's all about pain management, which can be done at home!
#CanavanDisease
#Disability
It's been a helluva day!
My youngest got through a six hour spinal surgery operation. She's intubated and sedated but everything seems to be going the right way.
Hopefully the next 48 hours will see her improve. If not, she's in the best place in the best hands.
#CanavanDisease
#Disability
When the Doctors say "we don't know much about #CanavanDisease but life expectancy is 4-7" and you are a happy 8 year old, that's special!!
My daughter, Immy, is one of 9 kiddies in the UK with Canavans so she is a wonderful, rare, beautiful shining light!
And here I am cracking open the #Fib
To all those who interacted with my post, yesterday, regarding my daughter thank you for the kind words.
If you fancy knowing more and following her journey we created an account for this on Instagram, just search @imogensfight
Cheers all 👍🏼
#CanavanDisease
#Disability
My youngest won the competition, at her school, for best costume as part of World Book Day.
She was a very hungry caterpillar indeed 😂😂
#CanavanDisease
#Disability
Airplane seat assignment leads to in-person visit between UMass Chan gene therapy researchers and Italian family whose toddler daughter received AA9 vector for Canavan disease in clinical trial: direc.to/myep
#RareDiseases #RareDiseases #CanavanDisease #GeneTherapy
See what Noa Greenwood has experienced since receiving gene therapy developed by UMass Chan Medical School researchers: direc.to/m2Wy
Noa has Canavan disease, a fatal disorder affecting the central nervous system, muscles and eyes. #CanavanDisease #RareDiseases #GeneTherapy @chronicle5.bsky.social
A wonderful evening at #RHSWisley with my family.
It was wonderfully accessible for Immy in her wheelchair.
#Family
#Glow
#Disability
#CanavanDisease
