DELETE THIS POST it is Obsolete Brilee Needs a Heart transplant

My Niece

Published on January 26, 2011 By Disturbedcomputer In WinCustomize Talk

Brilee Needs a Heart transplant

I am writing to you all in hopes you will send Brilee a Get Well soon card.

Brilee is my Great Niece; she was born November 29^th 2010, at Children's Hospital in St. Louis, Missouri

She has;

HLHS which is Hypoplastic left heart syndrome

Critical AS; bicuspid aortic valve, dilated LV with poor Function, moderate EFE of the LV, arch hypoplasia.

Intraoperative SVT, which progressed to ventricular tachycardia and ventricular fibrillation, on Digoxin.

Pre surgery large thrombi x2 noted within Left ventricle. Treated with lovenox therapy.

Tricuspid Valve regurgitation (post-operative).

at 10-days-old

On December 9^th Brilee had surgery; s/p Norwood reconstruction including an atrial septectomy, division of the patent ductus arteriosus, and placement of a right modified Blalock-Taussig shunt using a 4.0mm Gore-Tex graft.

On January 18^th Brilee was life lifted to Children’s Hospital in St. Louis Missouri

She has passed the entire test to be placed on the Transplant List Monday 23^rd January. She is an a1 on the list.

Today they took her off the Respirators at 1pm for the 4^th time this time Brilee crashed she is now stable and they have her on life support tomorrow Wednesday 26^th I hear they will run test to see if she has suffered Brain Damage, If she did they will remove her the Transplant List…

PLEASE send Brilee get well cards… she will be 8-weeks-old January 29^th 2011

St. Louis Children's Hospital

Brilee Marriott Rm 7

One Children's Place St. Louis, MO 63110

I know this will greatly lift my niece Jennifer and her Fiancé Sean spirits up..

Thank you.

Pictures

http://www.facebook.com/album.php?id=100001591729901&aid=20978

or

http://www.myspace.com/disturbedcomputer/photos/albums/brilee/1604516#mssrc=SitesPhotos_SP_AlbumCover_ViewAlbum

Videos

http://www.facebook.com/video/video.php?v=135961053133618

http://www.facebook.com/video/video.php?v=133055596757497

http://www.facebook.com/video/video.php?v=132953656767691

Edited

DrJBHL made a post here

A Get Well Thread For Brilee

Thank you Dr.JBHL

Comments (Page 3)

Disturbedcomputer

on Feb 03, 2011

Uvah looks great thanks

I give it 5 's out of 5

I put it on Brilee Heart Foundation

Thank you

Disturbedcomputer

on Feb 04, 2011

UPDATE:

yesterday

This is Brilee's mom (Jennifer) and dad (Sean) we just want to thank everyone for your support and to let everyone know how Brilee is doing she is in fare condition she's stable her stats keep dropping but they think she just don't like to be messed with though. But she's doing OK we also got the ct scan yesterday they did not find anything but waiting for MRI to be for sure right now they don't think she stable enough to make the trip to the MRI room but she is still on the transplant list THANK YOU ALL SO MUCH.

I just Talked To Jennifer about an hour ago, Her Job Fired her today... which she had the insurance.

How can a Company be so Damn Heartless?

Please Brilee and her Parents really do need you help.. Please Donate to Brilee Heart Foundation

at this time BHF can only take checks or Money orders Payable to: Brilee Heart Foundtion

as I am still waiting on the Paper work From the IRS I have the EIN # but the Bank needs the IRS forms on record

to open the Account at which will be US Bank

For now Mail Donations to:

10937 Richards Ct.

Lenexa, Kansas 66210

Thank You

Onklifiziert

on Feb 04, 2011

DisturbedComputer

reply 24

Update Jennifer (Brilee's mom My Niece) called and told me they took Brilee off the life support... so she is doing much better..

Good News DC, a baby should be no such thing to go through.

Uvah

on Feb 04, 2011

Tell her boss he sucks wind. No worries guy. Better days are coming. Keep the faith.

To you and yours.

Disturbedcomputer

on Feb 04, 2011

thanks I will keep the

faith.

sydneysiders

on Feb 04, 2011

I just Talked To Jennifer about an hour ago, Her Job Fired her today... which she had the insurance.

I take it you don't have any form of unfair dismissal laws over there... .. or was she casual...

wow...for a country that claims to be so advanced... the more I read and hear of your health treatment of citizens... and work conditions that would allow that.... it's about time you people got really angry about it....

Disturbedcomputer

on Feb 05, 2011

@ Syndysiders

She was on no pay Medical Leave Jen told me it was for 12 weeks Brilee is only 9-weeks-old

and prior to that Jen was on paid maternity pay which does not run with no pay Medical Leave..

but they said we will get your gas bill paid I wont say what she said

wow that's a hole new topic there.. they treat Animals in dog shelters better then some jobs treat humans.. People die every year working in warehouse's and factories from heat stroke while the animals in dog shelters are in A/C and heat...

I take it you don't have any form of unfair dismissal laws over there..

yes we do but Jenn is more worried about Brilee then getting a lawyer... but I hope she does that is just not right to fire ANY Parent that their child is going through a life and death crisis.

To add to my Reply #32

Please talk with you Churches, employers, radio stations, who ever you can think of

I want the Brilee Heart Foundation to be able to help other families that go through life and death medical crisis with their child.

I don't have kids but I know if I did the only thing on my mind would be my child and being right there with them...

I know Sean and Jennifer has not worked since Brilee was born well Jen worked one day Jan 25th and that night Brilee crashed.

Sean's Mom was able to raise some money from her work to pay there mortgage for February all the other utilities have been unpaid since December.

well they was paid on.

I know I just keep going on and on sorry...

Thank you all and God Bless you...

Uvah

on Feb 05, 2011

DisturbedComputer. Where do you live?

Disturbedcomputer

on Feb 05, 2011

DisturbedComputer. Where do you live?

10937 Richards Ct.

Lenexa, Kansas 66210

Uvah

on Feb 05, 2011

Thanks. I will talk to the admin here and see if she can put me in touch with some groups that may be able to help you. She'll be back on Monday. You may want to look at the local chapter of the Salvation Army. They sometimes can do fundraisers for those in need. Just a suggestion.

Philly0381

on Feb 05, 2011

Uvah has a good suggestion. You should also not ignore local TV, this is one of the things they generally get behind and support. Don't forget local news papers either. It's no doubt a hard time for Brilee's parents and family members so you have to use whatever resources are available to get the word out that help is needed.

Disturbedcomputer

on Feb 10, 2011

Update

we got Brilees MRI results back today and they were great she DOES NOT have any brain demage they said that she could have a small learning development but they wont know till shes older and that there is a small amout of blooding around the brain not in the brain it nothing to worry about and she gets to stay on th...e transplant list so now we just got to pray she gets a heart soon

Uvah

on Feb 10, 2011

Very good news DC. Did you contact the Salvation Army or the media? There are many groups nationwide you can go to for help.

www.americanheart.org

my.clevelandclinic.org

I found these two. Check them out. Perhaps they can put you in touch with some organizations that can help. Just explain your situation to them. I'm sure there's one out there.

TheCatsMeowMix

on Feb 11, 2011

To Disturbed Computer...

Isn't there The Family and Medical Leave Act that Jennifer and Sean can go after... I think it's called... that was passed by Congress some years ago that would help with the costs of Brilee's transplant or something? Or doesn't it have something to do with Jennifer losing her job because her baby is in a life or death situation and she needed to take time off of work after she was born? She couldn't help that. She needs to be with her baby!!!!! She's a precious little girl and should not lose her life because of the inability to pay for the transplant. I call that greed. It's bad enough someone else's child has to die for Brilee to be able to live... but possible for Brilee having to die too because of loss of insurance is the worst!!! I hope and pray for Jennifer... Sean... you... and Baby Brilee.... You are gonna have the transplant... and YOU ARE GONNA MAKE IT BABY GIRL!!!!!!

Hugs and kisses for Brilee...

The Cats Meow Mix

Disturbedcomputer

on Feb 11, 2011

Uvah

Thanks I will be checking into these Sorry I have been busy I was not intentionally ignoring your first post .. I really could have sworn I replied to it but when I came back on February 10, 2011 2:31:48 PM I did not see it. I probable didn't hit the send button...

The Cats Meow Mix

Thank you for Hugs and kisses for Brilee... and the Prayers..

The Family and Medical Leave Act

is so the parent(s) can be off work Without pay to be able to keep their Job. Jennifer's job is (from what I understand) is saying she has already used up her 12 weeks. (I myself) don't see how she could beings Brilee was 8 to 9 Weeks old when they fired her. granted Jennifer was off prier to Brilee being born but Jen was on Maternity leave with pay. I don't think her job can include the two into one.. but that's what it is sounding like. Sean Told me his mom is talking to an attorney. but I have no info or any progress on it, or if she has done it yet...

Update

I got the EIN paper work yesterday (Feb 9th) from the IRS opened the Bank account today (Feb 10th) and a PayPal account then went to Facebook to get the Donate Button for Brilee Heart Foundation. so far no go. I am lost.. I click on Marketing then Advertise on Facebook filled out all the forms and at the end of it. It wants to set it up as a Bid at which it will cost BHF $2.07 per click plus PayPal fees. so if Someone where to only donate $1.00 BHF would be set back $1.07 plus PayPal fees.. I have to be doing something WRONG... does anyone know how to do it? This this what I what? I know PayPal will let you set the $$ or have it open so the donator has the choice I chose this one but can change it, but really would like the Donator to pick how much they would like to Donate..

oh the bank is US Bank anyone can make a Deposit at any US Bank. or send a check from their bank to US Bank..

Bank Address:

10100 West 119th Street

Overland Park, KS. 66213

Attention of: Tamara Walters

Payable to:

Brilee Heart Foundation

thanks all for all the prayers, Hugs and Kisses and Info...

I am taking today Feb 11th off It's my Birthday...

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She has;

HLHS which is Hypoplastic left heart syndrome

Critical AS; bicuspid aortic valve, dilated LV with poor Function, moderate EFE of the LV, arch hypoplasia.

Intraoperative SVT, which progressed to ventricular tachycardia and ventricular fibrillation, on Digoxin.

Pre surgery large thrombi x2 noted within Left ventricle. Treated with lovenox therapy.

Tricuspid Valve regurgitation (post-operative).

at 10-days-old

On December 9th Brilee had surgery; s/p Norwood reconstruction including an atrial septectomy, division of the patent ductus arteriosus, and placement of a right modified Blalock-Taussig shunt using a 4.0mm Gore-Tex graft.

On January 18th Brilee was life lifted to Children’s Hospital in St. Louis Missouri

She has passed the entire test to be placed on the Transplant List Monday 23rd January. She is an a1 on the list.

Today they took her off the Respirators at 1pm for the 4th time this time Brilee crashed she is now stable and they have her on life support tomorrow Wednesday 26th I hear they will run test to see if she has suffered Brain Damage, If she did they will remove her the Transplant List…

PLEASE send Brilee get well cards… she will be 8-weeks-old January 29th 2011

St. Louis Children's Hospital

Brilee Marriott Rm 7

One Children's Place St. Louis, MO 63110

I know this will greatly lift my niece Jennifer and her Fiancé Sean spirits up..

Thank you.

Pictures

or

Videos

On December 9^th Brilee had surgery; s/p Norwood reconstruction including an atrial septectomy, division of the patent ductus arteriosus, and placement of a right modified Blalock-Taussig shunt using a 4.0mm Gore-Tex graft.

On January 18^th Brilee was life lifted to Children’s Hospital in St. Louis Missouri

She has passed the entire test to be placed on the Transplant List Monday 23^rd January. She is an a1 on the list.

Today they took her off the Respirators at 1pm for the 4^th time this time Brilee crashed she is now stable and they have her on life support tomorrow Wednesday 26^th I hear they will run test to see if she has suffered Brain Damage, If she did they will remove her the Transplant List…

PLEASE send Brilee get well cards… she will be 8-weeks-old January 29^th 2011