Mamma Me and my girl @MammasGirlBlog
I am mummy to a very beautiful and unique little girl. Sharing my experiences of parenting a child with #braininjury #autoimmuneencephalopathy #PANS Worcestershire Joined November 2018-
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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
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
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 gofundme.com/f/mind-over-ma…
We haven’t seen this handsome face for years, but have seen some recent small signs of improvement. If a child you know changes suddenly/brutally overnight think PANS/PANDAS. Early intervention with simple antibiotics could solve this. Wake up World ! I love you Son ❤️❤️
#panspandashour I couldn’t have wished for a happier more vibrant Son until PANS PANDAS stole him from me 4 years ago. He’s not dressed, washed or left the house for years. I’ve not seen his face for years and no longer know what he looks like. I love you mate ❤️❤️
He’s been MASKING autism since birth we were told. As vulnerable parents of a Son who had changed overnight. This to justify pumping him full of anti psychotics at age 9. I’m definitely not an expert on severe autism but what do you think ? Love you Son ❤️
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 gofund.me/d9b519f4
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 gofund.me/53dc5152
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.
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.
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.
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.
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.
💔💔💔
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
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
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
Shocked to read the FB comments about this sad story - accusing the media of scaremongering for running it! Would people really rather not know? halesowennews.co.uk/news/national/… #AstraZeneca #bloodclots
Another tribunal done & dusted - 45mins. We should not have been there. I won't charge the parents for my time today, but the public purse just paid for 3 members of the judiciary, plus the clerk, the LAs solicitor... then there's the parents lost pay....
I’m not sure I’ll ever comes to terms with the fact a simple course of steroids at onset could have prevented our daughter developing a life-changing brain injury. Every clinician in the country needs to be aware of these immune-mediated conditions. #PANS #encephalitis
I’m not sure I’ll ever comes to terms with the fact a simple course of steroids at onset could have prevented our daughter developing a life-changing brain injury. Every clinician in the country needs to be aware of these immune-mediated conditions. #PANS #encephalitis
This is so important 👇 Too many parents of #PANS children or other misunderstood neurological conditions get accused of fabricated illness - with potentially devastating consequences. Those that make ill-founded allegations should be held to account.
I wonder if a similar study has been carried out into the harm caused to thousands of special needs children who are left without any provision - in some cases for years. Or do their lives not matter? bbc.co.uk/news/education…
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