Above all you love her and that is the most special gift you can give her.
Are their (worldwide) groups or an organization/funds that can give a hand?
If you use paypal I would announce that address as well.
If you like you can freewrite, use the daily prompt so more people notice your messages and this great girl 💕
Not that I am aware of, Ohtahara syndrome is a very rare condition, so it is very understandble it doesn't get much attention as it should.
I just found them via Google and there are in the Netherlands. Frequently together with organisations about epilepsy. I just googled for the syndrome.
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Yes recurring seizures like an Epilepsy is very normal for patients with Ohtahara syndrome. It breaks my heart every time my daughter has one :( Another common occurence is pneumonia :( Pictures below were taken the last time she had pneumonia
As a mom it crushes my soul seeing my baby like that but I have to be very strong.
I can imagine how it feels. I will.write and share and hope people respond and someone out there turns out to be a big help.
💕☘
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Thank you so much wakeupkitty! You are all good people and I hope everything you're doing to help me comes back to you a hundredfold:)
Take good care of yourself! Moms are easily forgotten. I hope it will help 💕☘ for all of yoy.
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I will try and update as often as I can but please understand that I have to be hands on with my princess and that I barely have time for my own so it wouldn't be as often as I would like to. Sadly my Paypal account has been frozen a few months ago for some crappy reasons. I posted my BTC and LTC addresses if anyone wants other crypto addresses let me know, I have a Binance account.
Just see if you can write once a week or so.
💕 and ☘for you and the princess
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