Mamma Me and my girl

I am mummy to a very beautiful and unique little girl. Sharing my experiences of parenting a child with #braininjury #autoimmuneencephalopathy #PANS

[Mamma Me and my girl @MammasGirlBlog]

Yay SHE DID IT!! ♥️♥️♥️

A gigantic 15 kilometres with 96 obstacles 🙈🙈🙈

https://t.co/yggjubyuhJ

#PansPandas #PansPandasHour #ABI #AutoimmuneEncephalitis

[Mamma Me and my girl @MammasGirlBlog]

This is exactly what happened to my daughter. Hope of a future gone because this devastating condition was not recognised in time #PansPandas #PansPandasHour #ABI #AutoimmuneEncephalitis

[Hope @hopestardust20]

Mum wants all parents to know about condition that destroyed her daughter's life https://t.co/53GPLERCkv

[Mamma Me and my girl @MammasGirlBlog]

In 4 days our determined 10-year-old is tackling the WORLD’S LARGEST INFLATABLE OBSTACLE RUN. A gigantic 15 km course 😳 Please consider supporting her. She would love to know you are behind her ♥️ #PansPandas #PansPandasHour #ABI #AutoimmuneEncephalitis https://t.co/yggjubxWsb

[Mamma Me and my girl @MammasGirlBlog]

@Duchess_Woody @notestomyboy Been thinking a lot about this as my MIL older adult mental health team are so clued up on her infections impacting her mental health - yet my daughter suffers severe brain injury following ignorance by the NHS around the significance of infection in psychiatric presentations.

[Mamma Me and my girl @MammasGirlBlog]

@shellbrown1980 @notestomyboy It’s not rare. Just rarely diagnosed

[Mamma Me and my girl @MammasGirlBlog]

@notestomyboy My heart breaks for you. Having also lost my child to this illness and a misdiagnosis of autism I know what it’s like to constantly grieve for someone who is still physically here 💔

[Mamma Me and my girl @MammasGirlBlog]

Still a long way to go but money donated so far will make a huge difference. Read more via link on how the money is already being used. Thank u 2 all who have supported- whether making a donation or sharing ❤️ #PansPandasHour #ABI #autoimmuneencephalitis

https://t.co/91Ehf42kf4

[Mamma Me and my girl @MammasGirlBlog]

We are so grateful that more than 100 people have already supported our fundraiser for our girl. Please continue to help us secure a better future for her by donating or sharing our story #ABI #PANS #PansPandasHour #Autoimmuneencephalitis https://t.co/IMzne8N3vI

[Tim Clarke @TJClarke_]

You might have to remind my daughter what a teacher looks like, Robin. She hasn’t seen one for 3 years due to SEND services in Worcestershire being in complete meltdown. She’s 8 - brain injured and has had her hopes of rehab destroyed by Worcestershire Children First.

[Mamma Me and my girl @MammasGirlBlog]

@TheShrinkDr @naomicfisher I think you completely miss the point of the OP. My daughter school refused age 5. She now suffers with school related trauma. She is unlikely to ever attend a school again. She is so unwell she cannot even access education at home.

[Tim Clarke @TJClarke_]

No education or therapy for our brain injured daughter since spring 2019. The county council is only now slowly putting in place measures & provision that a tribunal ordered back in September. These failures should be treated as child negligence - that’s ultimately what it is.

[Mamma Me and my girl @MammasGirlBlog]

@StarlightMcKenz @londonteacher_ Yes completely agree. My daughter left reception year due to an acquired brain injury. She can no longer read or write but when I tried to get hold of her school work it had been thrown out. I sobbed my heart out when they told me 💔😭

[Tim Clarke @TJClarke_]

A damning indictment of local authorities negligence towards the needs of disabled children. Our EHCP appeal was upheld in September - but as parents we don’t ‘win’. The cost to our children of lost education, friendships and therapy is incalculable.

[Mamma Me and my girl @MammasGirlBlog]

💔💔💔

[Tim Clarke @TJClarke_]

This is our beautiful girl. She has a condition called PANS & acquired brain injury. She has been through so much - and missed out on so much too. Getting the correct diagnosis and treating brain inflammation early can change the course of a child’s life. #PansPandasAwarenessDay

[Tim Clarke @TJClarke_]

My heart aches not only for my daughter who now has an #ABI as a result of untreated brain inflammation - but the many children who continue to suffer unnecessarily. #panspandashour

[Mamma Me and my girl @MammasGirlBlog]

@EmmPett @TJClarke_ Hasn’t been able to access education for over 2 years yet still no therapy and support yet

[Tim Clarke @TJClarke_]

Afternoon spent reading 27-page assessment of our daughter’s brain injury - left with an overwhelming sense of sadness & anger over the way she has been failed. All of this avoidable had clinicians recognised the early signs of brain inflammation #pans #autoimmuneencephalitis

[Mamma Me and my girl @MammasGirlBlog]

@EmmPett @TJClarke_ So sorry Emma. We have assessments as far back as Spring 2019! Still nothing in place yet 😓

[Mamma Me and my girl @MammasGirlBlog]

@MikeJ_A @TJClarke_ Won’t bring our girl back 😢

[Beverly Rademacher (Bev Holder) @bevthenewsgirl]

Shocked to read the FB comments about this sad story - accusing the media of scaremongering for running it! Would people really rather not know? https://t.co/IpXyCsnq27 #AstraZeneca #bloodclots