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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.

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

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

I wish the best of health to your granddaughter.

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.

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

Pray for you all

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’

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.

dragonfly46 Wed 19-Aug-26 21:59:13

Sending you and your DGD my very best wishes and hope for a better future.

Iam64 Wed 19-Aug-26 21:59:12

πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ’–πŸ’–πŸ’–

Wyllow3 Wed 19-Aug-26 21:25:25

🫢🫢

MawsRosie Wed 19-Aug-26 20:30:10

Magenta8

I will light a candle for her.

And me

Casdon Wed 19-Aug-26 20:27:03

I hope she is accepted onto the trial Wyllow3, life would be so much better for her with less fits. Fingers crossed here too.

Wyllow3 Wed 19-Aug-26 20:22:25

My sympathies, Whingey. Not right at all 😑 x

They start a 24 hour observation tomorrow while she is wired up to stuff to look at brain and heart patterns, then have a chat on Friday about it with key staff. She will be OK, Dad there, and she has her tablet - its a big one, and she can see the colours and shapes of the cartoon characters at 6 inches away bouncing up and down and sings along.

NoodleNut Wed 19-Aug-26 20:16:35

Hoping for a positive outcome for your family.

ixion Wed 19-Aug-26 19:31:27

Hoping desperately for a positive outcome for your dear granddaughter and her caring family.
I await your news🌻

Magenta8 Wed 19-Aug-26 19:15:28

I will light a candle for her.

glammagran Wed 19-Aug-26 19:10:21

I sincerely hope your GD gets the help she so desperately needs from GOSH. I’m not religious but you will be in my thoughts.

MartavTaurus Wed 19-Aug-26 19:05:31

Best wishes and fingers crossed for you and yours.

Whingey Wed 19-Aug-26 18:29:49

Thinking of you all 😞 can't pray because of my 13 year old boy put in moral danger at the church school I chose but my heart aches for you

Allsorts Wed 19-Aug-26 18:26:13

Thats a lot of terrible conditions to live with. Great Ormond Street are wonderful and she has better chance there than anyway but its a hard path for her and her family.

crazyH Wed 19-Aug-26 18:24:57

Oh Wyllow - my heart aches for you. But, on a positive note, medical science has come on in leaps and bounds.
I do sincerely hope that she will be able to take part in this trial and that it will be a success …
My thoughts are with the your little DGD and all your family flowers

Wyllow3 Wed 19-Aug-26 18:21:55

The tests are tonight and tomorrow, then we will know if she is suitable, I'll report back when I know
Yes GOSH are brilliant

and so are you all, thank you x

Doodle Wed 19-Aug-26 18:06:17

Oh Wyllow of course she’ll be in my prayers. Do hope for a successful outcome. X

Horatia Wed 19-Aug-26 17:54:38

My very best wishes to you all.

fancythat Wed 19-Aug-26 17:53:00

I pray it has gone well.

silverlining48 Wed 19-Aug-26 17:46:24

GOSH is an outstanding hospital, one of my children worked there for many years.
I don’t pray but I really hope your gd gets accepted on the trial, or if not, that they can help with her seizures. I wish her and you and her family well.