~EB Memorials~

Junctional
Page 5

The generalized form of this is remarkably severe, known as gravis, Herlitz variant. This entity has bullae and large erosions occurring on mucosal surfaces. Even mild trauma can yield extensive erosions, and patients may suffer from frequent infection, sepsis, anemia, dehydration and malnutrition. Involvement may include the respiratory tree, gastrointestinal tract and genitourinary tract. Patients with the Herlitz variant rarely survive beyond their first birthday.

Austin Stanley Johnson

Austin Stanley Johnson born 02-19-06 and he died on 04-30-06 due to complications of EB. His mommy and dad, Val and Ryan I know miss his so much as well as his grandparents, his Aunts and uncles, and cousins who where all there when he took his first breath and his last. Godspeed little man!
We remember Austin's little sister, also lost to EB: Angel Johnson... to a little girl that should have been, but could not be... we wish we had a chance to know you. Love your family: The Johnson's, Leach's, Kendall's, & Balderrama

Email Austin's aunt Sarah

Courtney Leann Abner

Courtney Leann Abner, born June 3 2003 died April 17 2004 she had Junctional we are not sure what type of Junctional she had. We live in Ellenboro West Virginia. She died of respiratory arrest.
Courtney had a smile that would light up a room and through all her sickness she would still somehow manage to lift our spirits with her big blue eye's and beautiful smile. Daddy, Mommy. Mamma and papaw love you and miss you so very much. We know you are on Jesus' knee with perfect skin now. you will always be our little angel!!!

Email Courtney's daddy

Rebecca Paige Denise Stalker

Rebecca Paige Denise Stalker was born on April 15th, 2004, and died July 1st 2004. She had Junctional EB. Her family lives in Telford Shropshire (England)

 

Rebecca with her big sister Rochelle!

Email Rebecca's Mommy!

Jordan Marie Herreid

Jordan Marie Herreid was born on April 26, 2003. She was diagnosed with Junctional EB on the 13th of May, but it is still unknown exactly what subtype she had. She died in her Daddy's arms on July 30, 2003 at three months of age. Her family misses her very much but knows she is happy in heaven with her perfect skin.

 

Email Jordan's Mommy!

Zachary Hayden Olson

  

Zachary Hayden Olson was born on February 25, 2007 and returned to God on March 23, 2007. He had Junctional Herlitz EB.  We live in CA. Our precious angel showed us what true love was, and gave us a glimpse of Heaven on earth!!!! He is loved and missed dearly by his Mommy & Daddy! Blessed are the pure in heart: for they shall see God.

Email Zachary's Mommy!

Luis Boulle Couto

  

Luis Boulle Couto was born in Porto Alegre/RS (Brazil) with Junctional EB on January 20th, 2007 and died on June 4th, 2007.

One though we learnt during the short time we had our warrior angel with us: "When you think you have learnt how play the life, life comes and change all the rules..." We have fought so hard and have learnt so much in so short timeframe, that the only thing we can say to out angel after that is: Thank you for showing us what really makes difference: love! We love you so much, and we always do!
 
Dad, Mom and Mana
Email Luis' Mommy!

If your child died from complications of EB and you would like his or her photo on this page, please email Silvia...THANK YOU!!

You might also consider joining the EBangels mailing list below, to chat with other parents or anyone that has lost a loved one to Epidermolysis Bullosa.

Subscribe to EBangels
Powered by www.egroups.com


The Dance

Looking back on the memory of
The dance we shared 'neath the stars above
For a moment all the world was right
How could I have known that you'd ever say goodbye

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance

Holding you I held everything
For a moment wasn't I the king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all

It's my life is better left to chance
I could have missed the pain but I'd of had to miss the dance

  

Playing: The Dance by Garth Brooks
No act of kindness, no matter how small, is ever wasted. -Aesop
Website maintained and graphics by Princess Silvia | Sleeping Angel Creations & Services
Last Updated: February 07, 2007