my daughter was diagnosed with rasmussens encephalitis

[kap73]

hi everyone.. i hadnt even seen any of these notifications sorry

my familys world has been turned upside down.. on the 7th april my daughter was diagnosed with rasmussens encephalitis.. inflammation on the brain that progressively eats the brain cells on one hemisphere of the brain... there is no cure for this disease.. its so rare and the only definitive treatment is a hemispherectomy (disconnection of the R/H side of her brain) which comes
with irreversible consequences.. we are hoping to have this operation in sept-oct this year providing covid 19 doesnt disrupt our chance to fly to specialists.. she is in great spirits and has no idea what is goin on, she is running around enjoying life.. we are starting to see the progression of this disease tho.. slight paralysis in left of face and hemiparesis in left arm and leg

sorry to bring u guys heart breaking news... and thanks for your concern highrisk (i didnt see any of ur notifications mate) u had a gut feeling i guess

i wrote her a song please
listen and please
positive vibes for my baby girl. she is only 4 1/2

 

[ickyrica]

My wife's and my prayers are with you brother.

 

[kap73]

My wife's and my prayers are with you brother.

thank you for your prayers

 

[Logan44551]

hi everyone.. i hadnt even seen any of these notifications sorry

my familys world has been turned upside down.. on the 7th april my daughter was diagnosed with rasmussens encephalitis.. inflammation on the brain that progressively eats the brain cells on one hemisphere of the brain... there is no cure for this disease.. its so rare and the only definitive treatment is a hemispherectomy (disconnection of the R/H side of her brain) which comes
with irreversible consequences.. we are hoping to have this operation in sept-oct this year providing covid 19 doesnt disrupt our chance to fly to specialists.. she is in great spirits and has no idea what is goin on, she is running around enjoying life.. we are starting to see the progression of this disease tho.. slight paralysis in left of face and hemiparesis in left arm and leg

sorry to bring u guys heart breaking news... and thanks for your concern highrisk (i didnt see any of ur notifications mate) u had a gut feeling i guess

i wrote her a song please
listen and please
positive vibes for my baby girl. she is only 4 1/2

Man this is such horrible news. Definitely will be keeping you guys in my thoughts and sending good vibes.

 

[kap73]

Man this is such horrible news. Definitely will be keeping you guys in my thoughts and sending good vibes.

thanks mate, its heart breaking new for sure but as her father i cant break,
i cant show doubt.. she is to young to know how to doubt herself, the world
is still magic to her and im going to harness that and use it to her advantage during rehabilitation

 

[HIGHRISK]

Man @kap73 i can’t say enough how sorry I am to hear this. My family and I will keep your family in our prayers my brother. Sending love from the states my friend!

 

[kap73]

Man @kap73 i can’t say enough how sorry I am to hear this. My family and I will keep your family in our prayers my brother. Sending love from the states my friend!

appreciate your words mate and i promise every one here i'm going to
fight this right beside my lil girl... i sleep
on her bedroom floor every night

 

[ickyrica]

Olivia's journey: 3-year-old conquered a rare disorder all with a smile on her face | News | bakersfield.com

You're a strong dude. You guys got this.

 

[kap73]

Olivia's journey: 3-year-old conquered a rare disorder all with a smile on her face | News | bakersfield.com

You're a strong dude. You guys got this.

cheers for sharing, ive been done the wormhole for this and read alot of positive outcomes. i havent seen that one yet so thats just more beautiful news to help us remain positive

 

[ickyrica]

cheers for sharing, ive been done the wormhole for this and read alot of positive outcomes. i havent seen that one yet so thats just more beautiful news to help us remain positive

My wife sent that to me. She finds the positive in everything.

 

[HIGHRISK]

appreciate your words mate and i promise every one here i'm going to
fight this right beside my lil girl... i sleep
on her bedroom floor every night

We know you’re a good man and father. We know you are a tough son of bitch and will fight with her. Keep us posted please my friend.

 

[HIGHRISK]

Olivia's journey: 3-year-old conquered a rare disorder all with a smile on her face | News | bakersfield.com

You're a strong dude. You guys got this.

Damn man I was crying like baby reading that.

 

[kap73]

We know you’re a good man and father. We know you are a tough son of bitch and will fight with her. Keep us posted please my friend.

thanks alot mate, if everyone can think of her for just one second a day thats all the positive vibes we need

Damn man I was crying like baby reading that.

its a brutal disease but the outcomes can be very good considerning

 

[kap73]

thanks for moving my post millard, i didnt want to get that other thread off topic its a great thread

 

[Logan44551]

Just listened to your song. Damn your a good man @kap73 I'm not much for prayer, but will be giving it a shot for you and you little girl

 

[MindlessWork]

Sorry to hear of your beloved daughter's condition and my prayers to you and yours and hope that your daughter will be able to live a meaningful life even if the condition can't be cured but stopping the progressive damage.

Nice song btw...you got talent, @kap73 !

 

[kap73]

Just listened to your song. Damn your a good man @kap73 I'm not much for prayer, but will be giving it a shot for you and you little girl

thanks mate, just your thoughts about about my daughter is enough to help with positive energy

Sorry to hear of your beloved daughter's condition and my prayers to you and yours and hope that your daughter will be able to live a meaningful life even if the condition can't be cured but stopping the progressive damage.

Nice song btw...you got talent, @kap73 !

thanks alot, we will give her the best life out of this situation. if her personality stays then we wil always have out daughter.. for the situation it was actually an easy song to put together, i just let my love and pain combine and listened to what my heart had to say

 

[Logan44551]

thanks mate, just your thoughts about about my daughter is enough to help with positive energy



thanks alot, we will give her the best life out of this situation. if her personality stays then we wil always have out daughter.. for the situation it was actually an easy song to put together, i just let my love and pain combine and listened to what my heart had to say

Might think about setting up a GoFundMe or similar. I'd donate and share the hell out of it on social. If things get tight.

 

[kap73]

Might think about setting up a GoFundMe or similar. I'd donate and share the hell out of it on social. If things get tight.

i appreciate what your saying and irs a beautiful gesture by you

my company is going to sort something out from what i understand. ive been lucky ive earnt good coin and worked my arse off. got all bases covered in a way. i feel like there's people out there way worse off who dont even get a feed or kids that have parents who dont care for them. i will would feel bad for having people put their hands in their pockets. i dunno its just me i guess.

the reason ive made this song and came here to show u guys, is partly to have more people praying for my daughter but mainly this is about the next kid.. the next kid and parent dont need to go through 16months of medications that dont help.. we need to raise awareness
for this disease to cut the diagnosis times down..

thanks though bro its a great gesture
from you

 

[Silentlemon1011]

I'm not much for prayer, but I'll definitely send one her way.
Good luck Bro

Your daughter is obviously in good hands.
Love and good vibes from up here in Canada