Life.without.a.label

A mummy on a mission, searching for a #diagnosis for our little one, raising awareness for #raredisease & #undiagnosed #families. #blogging about our adventure.

[Action for ASD @Action4ASD]

Please show your support for these families. We have begun to tweet their experiences but this is only the beginning. We haven’t even scratched the surface. Tweet us a message of support for our families going through unimaginable distress right now and trying their very best

[Life.without.a.label @label_life]

@IncorrectEn @NeuroRebel That's really interesting! My son just moved up 2 high school + is taught within an asd unit, with some mainstream classes. He is bottom of the class for English BUT top of the class in French?! No one can work out how,he struggles with sight-reading, spelling, writing??

[Cleft Team Wales @CleftTeamWales]

22q11 Deletion is a type of chromosome disorder that is diagnosed by a special blood test. It is also known as; 22q11.2 microdeletion syndrome, velocardiofacial syndrome, Shprintzen syndrome or diGeorge syndrome. Find out more at https://t.co/Bmme2DOj3d @MaxAppealUK #22qAwareness

[Action for ASD @Action4ASD]

On Thursday we will begin to focus on support by social services that is being provided for families of children and adults with SEND. There are many worrying situations coming to our attention. We would like to explore exactly what is happening and how things can be changed

[Life.without.a.label @label_life]

@Action4ASD @fiightback

[Tracey 22q mum @traceyhennighan]

22q the MOST common chromosome disorder :You've probably never heard of!
Day 2 of 22qawareness month #22qawarenessdays
#maxappeal
Cerys has Congenital Talipes Equinovarus (CTEV) (club foot)(Right foot) : diagnosed pre natal: multiple procedures: operations, physiotherapy,

[Tracey 22q mum @traceyhennighan]

22q continued: Global hypotonia (low muscle tone : which cannot be improved by exercise it's due to the way the muscle is constructed/ congenital), Global development delay; Global lax ligaments.
But she keeps smiling.

[UK Parliament Human Rights Committee @HumanRightsCtte]

Our report finds that “Too often the concerns raised by the families of those with learning disabilities and/or autism are considered to be hostile. The families are seen as a problem. This is unacceptable.” @HarrietHarman https://t.co/yzfAnSB5st

[Max Appeal @MaxAppealUK]

November is awareness raising month for those affected by 22q11 Deletion Syndrome. Find out more about this frequent micro deletion https://t.co/8ZXX6leolq
@MaxAppealUK, @22qFoundation, @22Q11_Ireland, @22q11Europe

[22q11.2 Foundation @22qFoundation]

November is #22qAwareness Month! Join us in spreading the word to share information and resources about 22q11.2 deletion and duplication! Learn more here: https://t.co/Kb58CHxlH1 #22q #22qAwareness #22qAwarenessMonth #22qEmpowered

[Tracey 22q mum @traceyhennighan]

22q the MOST. common chromosome disorder
My beautiful daughter’s first photo.
Taken in NICU neonatal intensive care unit.
Whisked away when born.
Day 1 pf 22qawareness month 22qawarenessdays
@MaxAppealUK @thismorning

[Action for ASD @Action4ASD]

More and more evidence is showing that children with SEND are disproportionately and frighteningly falling out of the education system.our education system has now become a system where those with SEND are not welcome to an education.

[Action for ASD @Action4ASD]

https://t.co/pto8wTezsL
In my experience these are not knee jerk reactions. To state this is untrue. If parents views had been heard there is absolutely no way this conclusion would have been reached.

[PROWILD @PROWILD5]

https://t.co/K4MWxrkOdm
Please donate to the stroke association, this is fundraiser to repay for the support they gave me when I desperately needed it.

#StrokeSurvivor #stroke #charity #support #lifeafterastroke

[RARE Revolution Magazine® @RareRevolutionM]

Bit of reading for today. What are you reading at the moment? 📰📓📕📗

[PROWILD @PROWILD5]

#ProWild has a sister business #adventure #firstaid
#outdoor #survival #wilderness #WildNOut #wild #camping #wildcamping

[PROWILD @PROWILD5]

https://t.co/INEtn1qbtz

[Life.without.a.label @label_life]

@urvile Phillip Lee be like 🤣 (totally stolen from someone else) but its just too funny 🤣

[Life.without.a.label @label_life]

@GeneralBoles 🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣

[Arthritis UK @arthritisukorg]

When managing a long-term health condition, there’s no ‘right’ way to get moving. Every little victory counts. To find out how to get active with your condition, check out #WeAreUndefeatable, a new initiative we're proud to be a part of: https://t.co/1mPFcKjIgU