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Please help La di dah


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#1 *Ker*

Posted 22 February 2020 - 01:11 PM

Many of you will remember La di dah (and some of you may also remember her husband Ben, aka A Tiny Hedgehog), from the forums. She's been a part of us for some years now and has always been a massive support to anyone that needs it.

La di dah (Jordanna) and her husband Ben have a little boy, Sebastian. Sebastian is ill. I'm going to cut and paste from Jordanna's FB page.    

Quote


Sebastian Harvey has been diagnosed with a rare condition called Niemann-Pick Type A.
It is not a condition that has ever had a baby survive. We will do everything in our power for his care.
We know there are so many people who will be shocked and devastated. We ourselves, Ben and I, did not know he was medically fragile until mid-January and everything we thought we had has all gone away in weeks.
We had a pretty healthy and happy baby for a year.
He is mostly still pretty happy.
We will do everything to pour love on him. I know there is a lot of love out there for him.
He has only ever known the world as love and softness and with your help we will keep doing that for as long as we can





One of Jordanna and Ben's friends have set up a Go fund me account. Any help you could give them would be so much appreciated.

https://www.gofundme...ico share-sheet

Edited by *Ker*, 22 February 2020 - 01:14 PM.


#2 Lou-bags

Posted 22 February 2020 - 01:16 PM

That is completely devastating news. So sorry to hear this.

#3 SplashingRainbows

Posted 22 February 2020 - 01:20 PM

Oh Jordanna & Ben - I am so sorry.

I’ve donated. I hope your folks can get here soon.

#4 purplekitty

Posted 22 February 2020 - 01:33 PM

Done.

I wish you much love and strength,LDD.

#5 Veritas Vinum Arte

Posted 22 February 2020 - 01:35 PM

Oh wow. I can’t put my thoughts into words but know my heart goes out to you Jordanna, Ben and little Sebastian.

Going to donate now.

#6 Not Escapin Xmas

Posted 22 February 2020 - 01:37 PM

Oh no! I am so sorry LDD and Tiny. I can't imagine how tough you are doing it right now. Have put in $50 to your GoFundMe.

#7 born.a.girl

Posted 22 February 2020 - 01:42 PM

Done.  How devastating.

#8 Soontobegran

Posted 22 February 2020 - 01:43 PM

I am so very sad to hear this about little Seb.
Thank you *Ker* for posting this.

#9 Mrs Zee

Posted 22 February 2020 - 01:50 PM

I am devastated to hear this. I'm so sorry LDD and ATH.

#10 just roses

Posted 22 February 2020 - 02:04 PM

Thank you for posting this, have just donated.

Such devastating news :-(

#11 Silverstreak

Posted 22 February 2020 - 02:06 PM

So very sorry to hear this. Will donate when DH gets home with the card.

#12 CrankyM

Posted 22 February 2020 - 02:09 PM

Oh LDD I am so sorry.

#13 bearosauraus

Posted 22 February 2020 - 02:13 PM

Hi, I have close friends who are involved in the community of children with niemann pick (all types). The lost their son many years ago, but still involved through their own organisation.  I am happy to pass on details, just PM me if it is something they are open to

#14 eilca

Posted 22 February 2020 - 02:16 PM

LDD has been an integral member of EB and I am saddened to hear this, but I am thankful that EB has the opportunity to help.

Love and thoughts to all.

#15 kadoodle

Posted 22 February 2020 - 02:33 PM

Donated. I’m so, so, sorry LDD and ATH.

#16 Yippee-Ki-Yay

Posted 22 February 2020 - 02:34 PM

I am so sorry to read this. I will keep the family in my thoughts. I cant donate until pay day, but will do so then. x

#17 IamOzgirl

Posted 22 February 2020 - 02:41 PM

Oh gosh, I'm so sorry LDD.

I will donate.

#18 BusbyWilkes

Posted 22 February 2020 - 02:47 PM

So sorry to hear this LaDiDah and family. Have donated. X

#19 la di dah

Posted 22 February 2020 - 03:32 PM

Hi everyone,

Thank you for the support and kindness. I haven't been posting much in awhile, at first just busy in a happy way with a young baby and now it's just... very different. I can't explain what it's like.

EB can be such a sweet and good place

 bearosauraus, on 22 February 2020 - 02:13 PM, said:

Hi, I have close friends who are involved in the community of children with niemann pick (all types). The lost their son many years ago, but still involved through their own organisation.  I am happy to pass on details, just PM me if it is something they are open to

I'm open to it but I may not do anything with it for a while.

My head is all over the place at the moment, I've been living the last week at the hospital and it's just nightmarish and surreal.

If I don't reply or don't do something please know I just can't keep up with everything.

Its been like a bad dream.

#20 EsmeLennox

Posted 22 February 2020 - 03:35 PM

Oh LDD, how devastating. You must be in a total tailspin. Sending you strength. You’ll be in my thoughts.

#21 **Xena**

Posted 22 February 2020 - 03:51 PM

I am so, so sorry LDD. Much love to your family and your sweet baby boy. Just devastating and so unfair x

#22 rowd

Posted 22 February 2020 - 04:12 PM

LDD, I am so very sorry to hear this news. I remember seeing your posts often and being excited for you when you announced your pregnancy.

I lost my first born 2 years ago to an always fatal neurological disorder. She was diagnosed right after birth and lived for 14 months. If you ever want to chat, I'm here. Everyone's journey is different but I understand what it is like to feel like you are living a nightmare.

You are in my thoughts, I am truly so sorry you and your precious son are going through this.

ETA, I will send you a PM. I understand totally if you don't reply, but I will send it so you have my info just in case you ever want it.

Edited by rowd, 22 February 2020 - 04:13 PM.


#23 Lifesgood

Posted 22 February 2020 - 04:28 PM

I’m so sorry LDD. I hope you can find joy in the precious times you have ahead with Sebastian xxx

#24 FuzzyChocolateToes

Posted 22 February 2020 - 05:07 PM

Such a dear little fellow!  Love and hugs from my family to yours.

#25 Chamomile

Posted 22 February 2020 - 05:27 PM

I’m sorry. Please tell us if there is anything else we can do.




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