my daughter was diagnosed with rasmussens encephalitis

[ickyrica]

worked my arse off.

I'd say you're sitting at the top of the list of Meso workaholics tbh

 

[notdeadYET]

Praying for your daughters healing, and strength for you and your wife. I hated reading about this illness. I wish you all the best. Stay strong.

 

[Millard]

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

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.

Your daughter is obviously in good hands.

I'd say you're sitting at the top of the list of Meso workaholics tbh

Hard-work. Responsibility. Determination. Love. Devotion.

It's going to be alright no matter what happens because @kap73 is in her corner.

 

[Logan44551]

Hard-work. Responsibility. Determination. Love. Devotion.

It's going to be alright no matter what happens because @kap73 is in her corner.

Absolutely

 

[MadBret]

Prayers coming your daughters and families way. Hang in there bud.

 

[Oldschool]

Texas prayers and love headed down under big Kap. Stay strong for your family brother.

 

[4Figgy]

Prayers sent up for you, the family, and daughter. I can’t imagine, but stay strong for her.

 

[kap73]

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

thanks so much for your prayers

 

[kap73]

Texas prayers and love headed down under big Kap. Stay strong for your family brother.

cheers oldschool, hope your well. i wont break i promise

 

[kap73]

Prayers sent up for you, the family, and daughter. I can’t imagine, but stay strong for her.

thanks mate, all you guys are great

 

[kap73]

I'd say you're sitting at the top of the list of Meso workaholics tbh

Hard-work. Responsibility. Determination. Love. Devotion.

It's going to be alright no matter what happens because @kap73 is in her corner.

ive always taken pride in my work ethics, as my best mates said to me. the amount of passion and pride i have for the stuff i build they cant even imagine how much pride im goin to have rehabilitating my daughter and they are right.. this is the biggest, most important project im ever going to do.. and the adversity that comes with it is goin to fuel my determination

 

[kap73]

Praying for your daughters healing, and strength for you and your wife. I hated reading about this illness. I wish you all the best. Stay strong.

thanks for your prayers

 

[kap73]

Prayers coming your daughters and families way. Hang in there bud.

thanks mate appreciate it

 

[kap73]

Praying for your daughters healing, and strength for you and your wife. I hated reading about this illness. I wish you all the best. Stay strong.

thank you bro, yeh its a brutal disease. when we got the diagnosis our daughter had a seizure at the same time so we missed the word 'rasmussens' i just thiught she had autoimune encephalitis.. so i went home resding up on that and thiught yeh its a killer but its beatable quite easily.. then 3 weeks later i was reading and i found the rasmussens and i went oh thats the name he said... well fuck me didnt my world crash when it said no cure. it was midnight i sat up all night crying then i was feeding my 10month old breakfast and look at my 4 1/2 year old and i was crying .. and i couldnt bring myself to tell the missus..

 

[notdeadYET]

thank you bro, yeh its a brutal disease. when we got the diagnosis our daughter had a seizure at the same time so we missed the word 'rasmussens' i just thiught she had autoimune encephalitis.. so i went home resding up on that and thiught yeh its a killer but its beatable quite easily.. then 3 weeks later i was reading and i found the rasmussens and i went oh thats the name he said... well fuck me didnt my world crash when it said no cure. it was midnight i sat up all night crying then i was feeding my 10month old breakfast and look at my 4 1/2 year old and i was crying .. and i couldnt bring myself to tell the missus..

My daughter, she's about a year older than yours, had a seizure ~12 months ago. That shit shook me to my core. Then hearing that she had epilepsy really fucked me up. You never want to see your child hurt, scared, sick. Control what you can control. Love the hell out of her, your wife, your other children. You may have a new normal but fuck it man - cherish every moment you have with her. If you need anything, I'm also more than willing to help.

 

[Oldschool]

If you need anything, I'm also more than willing to help.

Me too

 

[kap73]

My daughter, she's about a year older than yours, had a seizure ~12 months ago. That shit shook me to my core. Then hearing that she had epilepsy really fucked me up. You never want to see your child hurt, scared, sick. Control what you can control. Love the hell out of her, your wife, your other children. You may have a new normal but fuck it man - cherish every moment you have with her. If you need anything, I'm also more than willing to help.

very scary stuff to witness, ive documented every seizure and made graphs to help neurologists track her data and the curve increase. she has had over 300 now, i also made an information sheet for her school to help them spot the seizure early before it intensifies

thanks for your positive thoughts

 

[Mdrock98]

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

Prayers sent. Stay strong brother, and keep smiling for her..

 

[MisterSuperGod]

i sleep on her bedroom floor every night

That brought a tear to my eye reading that.
You're a good man and a hell of a father. Never lose hope, brother.

 

[kap73]

Prayers sent. Stay strong brother, and keep smiling for her..

thanks bro