Brianna Gives Hope: Memorial Date

Friday, September 4, 2009

Memorial Date

Brianna's Memorial is scheduled for Saturday, September 12, 2009 at 3:00 p.m.
First Presbyterian Church Downtown Orlando, in the sanctuary
106 East Church Street
Orlando, FL

In lieu of flowers we request donations be made to our newly formed non-profit organization: Brianna Gives Hope
We will be posting information on how and where to donate by Tuesday. The Brianna Gives Hope foundation has been created to help other families in similar situations with respite care, provide happy, colorful hospital gowns for sick children, equipment, and that is just the beginning. Our goal is to give back, Brianna gave us so much and we want to pass on the love.

I'm sure Brianna would be pleased to look down and see everyone wearing bright colors at her Memorial for this will be a day to celebrate her life, not mourn her leaving.

We are also checking into hotel information for out-of-town visitors. Should have that posted in the next day or two as well.

One more thing, Jerry and I will be going to church this Sunday and invite you to come with us. God knows we need all the support we can muster at this point. We will be attending the 11:00 am Genesis Service at First Pres. (address above). Meet us under the angel wing (just ask when you get there) or in the Genesis service, we plan on sitting in the front.

4 comments:

DyaneSeptember 5, 2009 at 10:48 AM
I'm so sorry for your loss, but so happy you had so much time with her. I hope you feel the prayers and love of family, friends and strangers. Take care.

Dyane Higgin, (another mom of a Trisomy 18 angel- Adeline)
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CathySeptember 5, 2009 at 12:29 PM
Thank you for the information. So wish I could be there Sunday to sit with your family, but will be there next Saturday. Now that we will continue to lift your family in prayer and thanksgiving for Brianna's beautiful life.
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christinaSeptember 6, 2009 at 12:45 AM
i want to give you some baby beanies when the time comes for the foundation. (i just started making them...turned it into a biz, want to connect to Bri and my Cana and other T18 babes thru this...)

if you'll have me. And i'll just remind you as the time comes.

I'm so broken with you and mourning with you (hope thats ok, from a stranger)...but then again, having shared the joys of seeing her sweet sweet face and feeling closer to my baby girl thru yours...i think you get my heart too.

still here with you. lifting you all up as you glorify the Lord in your suffering. What an honor to suffer with you.
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John ViscusoSeptember 8, 2009 at 9:19 AM
Our thoughts and prayers are with you and your family. Words, however kind, can't mend your heartache: but those who care and share your loss wish you comfort and peace of mind. May you find strength in the love of family and in the warm embrace of friends.

Thinking of You with Sympathy

John Viscuso and Family
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Definition of Trisomy 18

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.

But oh, how we love these special little babies. When Brianna was born we were told she would probably leave this earth within 24 hours...but look at her now. 24 months old, healthy, adorable and amazing. God has been so good. Brenda

Bri's Medical Condition

Brianna was full-term born on April 12, 2007, weighing 5 lb 18 oz and 18" long. Her Apgar scores at birth were 8 and 9. Approximately 15 hours after her birth we were advised of the tentative Trisomy 18 diagnosis.

Immediate health issues had to do with her heart: Mainly, a VSD (Ventricular Septal Defect); PDA (Patent Ductus Arteriosus) ; and a PFO.

Open Heart Surgery at 4 months and

G-tube placement before we came home.

Eye surgery in Spring of '08 to correct cross-eyes.

Tubes placed in ears in Fall of '08 hoping to quash the numerous ear infections.

Scan of abdominal section in Dec. '08. Everthing appears normal.

Brianna takes formula by g-tube but eats baby food by mouth. She can hear, see, is rolling over, sitting up, trying to crawl, playing with toys, says "da da"; "do it, do it, do it" and various other sounds. She is the happiest child we have ever known.

We are so very blessed.

Brianna Gives Hope

Friday, September 4, 2009

Memorial Date

4 comments:

Our Family, Nov 2007

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