prayers needed

[stenchmiester]

well i am asking for everyones prayers my youngest daughter brooklynn will be 2years old next month and has had serious medical issues in her life. she has now been diagnosed with alexanders disease which is extrememely fatal. she had her first onset at 6 months old and they are not projecting her life span to be more than her 4th birthday. since 1948 they have only discovered 500 cases of the disease there is no cure or way to slow it down. i ask for all of you to keep her in your heart and pray that she makes it through this. i am going to be setting up some sort of benefits so we can afford to take her on vacations. if you want to read into more here is some info thank you all and god bless http://en.wikipedia.org/wiki/Alexander_disease

[Holeshot]

Im so sorry. Will keep here in my thoughts. Check in to Make a Wish Its not just for children with cancer.
http://www.wisconsin.wish.org/index.html

[stenchmiester]

make a wish wont help her until shes 2.5 years old

[Prince Valiant]

will keep her and all little ones and their families facing such dire diagnosis in my prayers...treat each day as a blessing...

[jamestown478]

damn man I am sorry. I'll keep her in my prayers.

[nismodave]

Prayers sent.

[03Seville]

My prayers are with you and your family, I couldn't imagine being in you shoes right now.

Cherish every moment you have...

[Yooformula]

wow, so sorry to hear about this. You will all be in our prayers and thoughts.

[Nix]

Im truly sorry to hear about this man. Like other have said treat each day as a true blessing and never give up hope. I wish you and your family the best of luck and I will keep all of you in my prayers.

God Bless

[Memphis]

man, words dont even seem to convey what most people are feeling. anything we can do, just ask. I have two kids, cannot imagine having to go through anything like that.

[73MACH]

We are here for you buddy.....

[michelle]

Sending good thoughts. I'm so sorry.

[noeggs4u]

As I read this I'm not sure what to say. I am a father of 3 and 1 step child. I pray for strength for u and your wife. A child is never supposed to go before us. These are the times we need to all step back and remember what is important to us. My prayers are with your child and your family. We all are here to help in any way we can. Any one who has children will understand this.

[stenchmiester]

thanks everyone its been extrememly rough. we were trying to find a doctor and this and that and stuff to hopefuly find a cure a dr at uw madison stopped me dead in my tracks when we took her there for some blood work and told me "stop trying to find a way to fix her and just enjoy your time with her." so that is what i have been doing i am currently saving money to take her on vacation this winter to disney world. i know she is a little young yet but i want her to have the best life possible with out being spoiled i dont want her growing up getting spoiled just because she is ill. she has a beautiful healthy 28 month old sister who adores playing with her and i am just gonna be devasted for my other daughter to lose her bestfriend.

[Bobby "Big Daddy" Flay]

as a father with a 8 month old son, and having multiple helath issues myself as an infant and toddler, i sincerely send my prayers and thoughts to you and your family

[TheRX7Project]

This is very sad, man. I am sorry to hear this.

[Yooformula]

i know she is a little young yet but i want her to have the best life possible with out being spoiled i dont want her growing up getting spoiled just because she is ill. she has a beautiful healthy 28 month old sister who adores playing with her and i am just gonna be devasted for my other daughter to lose her bestfriend.

While you have the time to, SPOIL THEM BOTH BRO!

[Reverend Cooper]

WOW all I can say,prayers sent.

[Waver]

Sorry to hear this man. If there is anything that you or your family need, dont hesitate.

[stenchmiester]

I need everyone's prayers even more. We had another ct scan done and tje white matter is progressing. Also her pituitary gland is shutting down. So there is a possibility she may not grow any bigger than she is now. I am I'm the process of setting up a fundrasier/benefit. Any ideas from members would be greatly appreciated

[GTSLOW]

Oh wow man I am so sorry to hear this. I'm no planner but would be happy to help out with a fund raiser/attend.

:(

[stenchmiester]

thanks nan i will keep everyone informed on what we plan and how she is doing.

[noeggs4u]

Prayers for you and your family.

[Nix]

Im still praying for you and your family. Keep us posted...

[stenchmiester]

Sorry i havent updates lately. Between work school and The kids lifes Been hectic. Lastest update The white matters moved and has started into her pituitary gland. The right side of her body has Been getting worse worse. We were informed once it full take over The glánd there is telling How much linger she will have left with us

[stenchmiester]

ok another major update upon further doctor appointments it appears she was only born with half her pituitary gland. she will be an extreme diabetic for the rest of her life. the disease is affecting so much of her brain activity she can play for about an hour and has too rest for about 20 mins before she can play again. she cant have substances with dies in them for they now upset her stomache. so we have her on all natural diet and meds. has anyone ever gone through something this rough with there child or family member? i am beating myself uo and down blaming myself even though it was genes. i live in constant fear everyday of what may happen or how im going too react if the ineviable happens

[Yooformula]

I am sorry to hear about this. She is in our prayers and I wish there was something anyone could say to make you feel better. Imo, enjoy the good times as much as you can and make her the priority, not the toys/job. For as short of time as you have, keep her surrounded by family, love and prayers. Losing a child is any parents worst fear so your thoughts and reacts would be no different from any of ours. You cant dwell on the what if and when, just enjoy what you have for as long as you can. pictures and videos!!!

[Brian98GTP]

I am sorry to hear about this. She is in our prayers and I wish there was something anyone could say to make you feel better. Imo, enjoy the good times as much as you can and make her the priority, not the toys/job. For as short of time as you have, keep her surrounded by family, love and prayers. Losing a child is any parents worst fear so your thoughts and reacts would be no different from any of ours. You cant dwell on the what if and when, just enjoy what you have for as long as you can. pictures and videos!!!

x2....
I can't even think of what to SAY to somebody in your situation. I'll type a bit, then delete and start over. <--- Even all that took me 10+ minutes. My heart goes out to you and your family. A parent would do anything IMAGINABLE to take the place of their child in a situation like this....but when there isn't a chance to, all you can do is what Yoo said. Spoil her with love and attention as much as humanly possible. Don't place blame on anything or anyone.... there was nothing anybody could've done to prevent this. Instead, feel grateful that you have the time you do. I'm sure parents who lose their child at birth wish they could've had a few years. So cherish your time with her, and give her the best life she could possibly have.
My 3 year old daughter means everything to me. I think of your story almost on a daily basis, and it makes me cherish every moment I have with her even more than I already do. Because if it isnt a disease or sickness....it could be a speeding SUV, or a small piece of hotdog. You just never know...
Hang in there, man.

[Haulin' Oates]

Thinking about your daughter.

[BAD LS1]

From a Dad with two young daughters: My heart, thoughts and prayers go out to you and your family. I cannot fathem the idea of this or how to ever deal with it.

-Tom

[97z2801ss]

From a dad with two small boys, my thoughts and prayers are with you man. Let us know if there is anything we can do

[Cryptic]

I can't even think of what to SAY to somebody in your situation. I'll type a bit, then delete and start over. <--- Even all that took me 10+ minutes.

Same here. Your situation leaves me without many words. I think about all the things that stress me out throughout my day/week and that is small potatoes to anything you have to deal with. My thoughts are with your family.

[Rifleman WI]

Sorry to hear about this man, don't beat yourself up over it, just enjoy the time you have.

[97z2801ss]

my teacher busted me out today reading this thread while he was talking, made me talk about it in class, everyone in my marketing management class sends there prayers aswell, if you need help with the fundraiser people have asked how to help.

[Ricky Bobby]

prayers for u and the family, LMK if u need anything

[stenchmiester]

thanks for the prayers everyone. i spoke too yoo last night and am gonna try too open a donation type account at the bank for her. i want so badly too set up a fundraiser but with work and school and trying to spend time with her and my other daughter i just dont have any free time to do so.

if anyone here has some simple ideas please feel free too let me know

[stenchmiester]

Well here is a donation site my fiance and I were able too setup. Also a few members have been figuring out fundraisers and I can't express hope much it means too my family and I

http://m.facebook.com/l.php?u=http%3A%2F%2Fwww.giveforward.com%2Fhelpbab ybrooklynnbeatalexanderdisease&h=wAQFIurnT&refid=52&ref=m_notif

[stenchmiester]

Another major update. I am on my way to children's hospital. She had another seizure this evening that lasted 40 minutes and is having complication wit her whole right side. When the seizure started her mom administered her diastat (rectal mergency seizure medication) and it did not work. Please keep my little girl in your prayers tonight.

[michelle]

Thinking very good thoughts for your daughter and family.

[stenchmiester]

neurologist just came in and is giving her a higher dosage of her daily seizure meds. she is eating and drinking. she has no interest in walking right now. there biggest concern right now is that the seaizure was mainly her right side. the side that she has been struggling with the diseas effecting the most so we need too watch for any signs of paralysis.. thank you everyone for your prayers

[Yooformula]

We are saying prayers for her. So sorry to read this.

sent from my phone dammit

[BigSnailBuick]

:( Sorry to hear. Will send one up for her indeed!

As for ideas...well when its nice out a charity drag night or golf outing would be great and are usually a great success! As for ideas when its cold out im fresh out..scratches noggin.

[noeggs4u]

Prayers for you from one father to another.

[Yooformula]

:( Sorry to hear. Will send one up for her indeed!

As for ideas...well when its nice out a charity drag night or golf outing would be great and are usually a great success! As for ideas when its cold out im fresh out..scratches noggin.

Try this..http://www.giveforward.com/helpbabybrooklynnbeatalexanderdisease


http://www.brewcitymuscle.com/forum/showthread.php?52984-Please-help-a-member-and-his-family-with-a-donation

[Waver]

My family's thoughts and prayers are with you and yours, man. If there is anything that I can do to help you out, let me know.

[stenchmiester]

Well this seizure sent her development backwards. Most of her broken library of words is gone ang she I'd struggle too pronounce the words. She is time and is doing ok as of right now. We see the neuro specialist tomorrow and will know more about how much it delayed her and effected everything