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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.

ixion Fri 21-Aug-26 14:13:22

Thrilled for you all, Wyllow.

Great beginnings!

ReturningFromExile Fri 21-Aug-26 14:02:12

Wonderful news. All best wishes for a good outcome to the trial!

V3ra Fri 21-Aug-26 13:59:19

Wonderful news!

Wyllow3 Fri 21-Aug-26 13:58:41

The actual operation will be scheduled in a month or so, what matters is the acceptance on this very limited trial operation, maybe 30 patients children from all over the country.

They may have been interested to have at least one patient with multiple disabilities to see just how useful the operation can be, not only patients with epilepsy. Glad for them all. And it wasnt advertised for multiple disabilities - my fab DiL found it reading away and pushed for it.

HowVeryDareYou2 Fri 21-Aug-26 13:55:20

Great news, Wyllow3. I hope the treatment is successful and makes a big difference in your granddaughter's life (and in the parents' caring responsibilities, too). What a marvellous Disney-themed area for the children at GOSH. The children will love it.

ClicketyClick Fri 21-Aug-26 13:49:21

Such good news and praying that she has a happy outcome.

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

Great news Wyllow3. Thanks for the update.

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/

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

Wyllow3

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

thanks

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

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

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

I’m praying for her now.🌺

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

Thinking of you all. flowers

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

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

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".

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

πŸ™

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

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

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»

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.

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

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

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

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

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".

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

Hoping and praying for a good outcome for your granddaughter Wyllow

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

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

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

Thinking of your dear GD and all the family Wyllow

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

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