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Please hold my dear GD in your heart for a few days.

(182 Posts)
Wyllow3 Wed 19-Aug-26 10:41:35

My lovely DGD age 12 has multiple disabilities.

She can not see beyond 6/8 inches, she has severe epilepsy, cerebral palsy, learning difficulties. Its getting worse not better as she gets older, the epileptic fits very 2 hours mean she is exhausted all the time (not to mention parents, 4 children) and so her learning disabilities get worse and willingness to move around (crawl). In Covid she had to be intubated for 4 days the worst days ~I can recall but it was precautionary as it turned out. But it made me feel, "take me, take me", its not right.

She is a happy soul and sings along to her favourite songs and carries around a yellow shark (protection?)

But today Dad and L set out on the train (she loves trains) to go to Great Ormund Street H to see if she can take part in a trial. this small and fairly safe brain operation would take away 90% of the epilepsy - and give her the chance to be less tired and more mobile and improved learning abilities.

Prayers, and warm thoughts most welcome.

25Avalon Wed 19-Aug-26 22:05:39

It’s humbling how those with disabilities can be so accepting and happy. Your well loved gd is one of those and I do so hope she is accepted on the trial and life improves for her and all the family.

Lovetopaint037 Thu 20-Aug-26 00:02:52

Heartfelt good wishes and my prayers for your little sweetheart are sent. Please let us know how she is. πŸ’

Lolly123 Thu 20-Aug-26 00:43:29

Pray for you all

Sarnia Thu 20-Aug-26 01:05:48

I sincerely hope that the wonderful Great Ormond Street Hospital will accept your GD and give her and all of you who love her some quality of life.
I won't be patronising and say I know how you feel because I don't. I can hardly begin to imagine how heart-breaking it must be to see your beloved GD suffer like this.
You will be in my thoughts. Please let us know how she gets on.

Redhead56 Thu 20-Aug-26 01:14:59

I wish the best of health to your granddaughter.

Grannmarie Thu 20-Aug-26 10:16:19

Thinking of you and yours, Wyllow, keeping L. and all who love her and care for her in my prayers.πŸ•―οΈπŸ™πŸ•―οΈ

NotSpaghetti Thu 20-Aug-26 10:35:35

Thinking of you all today and praying that the outcome is positive.
flowers

AskAlice Thu 20-Aug-26 10:38:02

Thinking of your dear GD and all the family Wyllow

AGAA4 Thu 20-Aug-26 10:40:11

Hoping for the best outcome for your DGD πŸ™πŸ™πŸ™

sodapop Thu 20-Aug-26 15:39:39

Hoping and praying for a good outcome for your granddaughter Wyllow

Wyllow3 Thu 20-Aug-26 15:48:25

I'll get any news through asap. Family all waiting.
She can be very funny- at a previous hospital time, angrily, she told the doctor very seriously, "I want to bite you".

Wyllow3 Thu 20-Aug-26 15:54:16

Everyone needs a protector like this: feel free to share any family Special Friends.

fancyflowers Thu 20-Aug-26 15:56:36

Wishing your GD the best possible outcome. Sending love to you. flowers

LovesBach Thu 20-Aug-26 15:56:55

I hope your precious granddaughter is able to receive this treatment; what a terible burden for you all, and mostly for her.

Nightsky2 Thu 20-Aug-26 16:13:14

Very best wishes to L. I hope it all goes well for her today, she’s in very good hands. πŸ™πŸ»

NotAGran55 Thu 20-Aug-26 16:58:14

I hope that everything is going well for your GD today, and positive news.

Plevey08 Thu 20-Aug-26 17:35:10

πŸ™

Chocolatelovinggran Thu 20-Aug-26 17:49:27

Oh, Wyllow, your GD is very perceptive.
How many times have I smiled politely at a doctor, or other professional, whilst thinking " I'd really like to bite you".

4allweknow Thu 20-Aug-26 18:24:06

Kind thoughts for all concerned. Hope positive outcome from GOSH.

Grammaretto Thu 20-Aug-26 18:38:29

Thinking of you all. flowers

Harris27 Thu 20-Aug-26 18:49:04

I’m praying for her now.🌺

Cossy Thu 20-Aug-26 20:18:22

Thinking about your precious GD today πŸŒ»πŸŒ»πŸ’•πŸ’•

Cossy Thu 20-Aug-26 20:18:46

Wyllow3

Everyone needs a protector like this: feel free to share any family Special Friends.

thanks

Wyllow3 Fri 21-Aug-26 13:29:41

Oh I was in tears about something entirely else (no biggie)

and then the WhatsApps came through

"Okay they just told us we are almost certain to be on the trial smile

"Needs formal sign off but they are happy they made the diagnosis"

Me - "oh, oh my, oh my… πŸ₯°πŸŽΆπŸŽΆ (more sniffling)

Then after yesterdays sad picture of her with electrodes all over looking so unhappy she is now having a simply fab happy time at the GOSH Disneyland section - I found a picture of it -

thewaltdisneycompany.com/news/disney-designed-childrens-play-area-opens-at-londons-great-ormond-street-hospital/

AGAA4 Fri 21-Aug-26 13:42:49

Great news Wyllow3. Thanks for the update.