Polymicrogyria Family Support

Polymicrogyria Family Support aims to raise awareness and to provide support to improve the lives of families affected by Polymicrogyria in the UK and Ireland.

[Polymicrogyria Family Support @PMGSUPPORTUK]

@channy757 Do you mean in regards to reduced white matter or calcification for example? That would be separate though often we will see several different brain malformations hand in hand.

[Polymicrogyria Family Support @PMGSUPPORTUK]

It is with a heavy heart that I must let you know that Lisa, a fellow PMG Mum, passed away last night from Covid 19.
Please send love to Lisa's family and her own #PMGStar to give them strength at this awful time.

[Polymicrogyria Family Support @PMGSUPPORTUK]

I have spoken with Lisa's Mum and she informs me that Lisa is currently stable but still ventilated and in an induced coma.
Please continue to pray for her and send positive thoughts to her and her family.

[Polymicrogyria Family Support @PMGSUPPORTUK]

@rahul_kr_india @aiims_newdelhi @AiimsNeurology There are surgeries which can sometimes help with epilepsy but these will not cure the PMG as that is the way the brain is formed. The epilepsy is about the behaviour of the brain. If the surgery can help control or stop the epilepsy then it may give way to progress with physio.

[Polymicrogyria Family Support @PMGSUPPORTUK]

@rahul_kr_india @aiims_newdelhi @AiimsNeurology The most important thing for her is physiotherapy to help her achieve her full potential. Her life may not look like you would have wanted or expected but that doesn't mean it can't still be a good one. Does she have epilepsy too?

[Polymicrogyria Family Support @PMGSUPPORTUK]

The Mum of one of our #PMGStars is in hospital, ventilated & in an induced coma due to suspected #Covid19. This is a terrifying time for us all & so I would ask that everyone of you who reads this, says a prayer & sends positive thoughts and love to Lisa that she survives.

[Polymicrogyria Family Support @PMGSUPPORTUK]

@BTGroup @DisRightsUK @MailOnline This Mum has two children with life limiting conditions and THIS is what a @BTGroup employee thought was appropriate. Sort out her service for goodness sake. I don't want to be tweeting about how the lack of service contributed to a tragedy.

[Polymicrogyria Family Support @PMGSUPPORTUK]

And they're all gone!

[Polymicrogyria Family Support @PMGSUPPORTUK]

Well after zero help from the pointless @Hermesparcels Twitter team the call centres Amelia and Adam came through and 44 parcels were collected this afternoon. The rest will be collected tomorrow morning! Result!

[Polymicrogyria Family Support @PMGSUPPORTUK]

Well after zero help from the pointless @Hermesparcels Twitter team the call centres Amelia and Adam came through and 44 parcels were collected this afternoon. The rest will be collected tomorrow morning! Result!

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels I have 37 parcels waiting to go out to disabled children. Along with another 22 on Friday and 20 on Saturday and you give a collection slot of 8-8 🙄 Despite me trying to get in touch with you because I predicted an issue no one has bothered to reply...1/3

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels still no response whatsoever but your driver did just turn up....in a vehicle about the same size as a 7 seater! So I still have 37 parcels waiting to be collected, along with 22 on Friday and 20 on Saturday. Maybe someone could actually reply to this and help me!

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels I have 37 parcels waiting to go out to disabled children. Along with another 22 on Friday and 20 on Saturday and you give a collection slot of 8-8 🙄 Despite me trying to get in touch with you because I predicted an issue no one has bothered to reply...1/3

[Polymicrogyria Family Support @PMGSUPPORTUK]

@LylasAngels @Hermesparcels 😂😂😂😂😂😭😭😭😭😭
That would be a no! I think they are on holiday for the month....

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels I have 37 parcels waiting to go out to disabled children. Along with another 22 on Friday and 20 on Saturday and you give a collection slot of 8-8 🙄 Despite me trying to get in touch with you because I predicted an issue no one has bothered to reply...1/3

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels I need to speak to someone about my parcel collection today. Can you give me a phone number or DM me please?

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels Has everyone gone home for the holidays already? Really need to speak to someone ASAP

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels Could someone please get in touch with me ASAP. Do I need to cancel all 79 parcels and go with someone else?
Have tried local drop off but they will only take 4 a day!

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels Could someone please get in touch with me ASAP. Do I need to cancel all 79 parcels and go with someone else?
Have tried local drop off but they will only take 4 a day!

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels I have 37 parcels waiting to go out to disabled children. Along with another 22 on Friday and 20 on Saturday and you give a collection slot of 8-8 🙄 Despite me trying to get in touch with you because I predicted an issue no one has bothered to reply...1/3

[Polymicrogyria Family Support @PMGSUPPORTUK]

....and they left me a note in return. Tomorrow I am attending a hospital appointment so won't be here! No number for me even to call! Nice to see Christmas Spirit in Hermes drivers is dead! 3/3

[Polymicrogyria Family Support @PMGSUPPORTUK]

...I had to go out for 10 minutes to collect my daughter from school which is unavoidable and so left a note for the driver....2/3

[Polymicrogyria Family Support @PMGSUPPORTUK]

Really hope I am not tweeting later about a problem.....

[Polymicrogyria Family Support @PMGSUPPORTUK]

@Hermesparcels I need to speak to someone about my parcel collection today. Can you give me a phone number or DM me please?

[Polymicrogyria Family Support @PMGSUPPORTUK]

@JGVegaware @Lady_Sinead She is amazing xx