~EB Memorials~
Junctional
Page 1
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.
Adam Stevenson
Adam Jacob Stevenson was born June 24th, 1996 and died October 14th, 1996 at 14 weeks of age. He had the "Herlitz" Junctional form of EB and died of a blood infection from a surgery done to insert a gastronomy tube. He died in his mommy's arms.
Her mom and dad, Mark and Heather Stevenson, miss him terribly. Adam has a brother and sister now, both healthy. Anna-Noel was born August 25, 1997, and Caleb James was born March 10th, 1999. The above picture was taken just a few days after Adam's birth.
Allison Stang
Allison Stang was born February 9, 1996 and died May 25, 1996 at 3.5 months of age. She had the "Herlitz" Junctional form of EB and died from gastro esophageal reflux with aspiration. Her mommy Fiona and her big sister Katie miss her very much!
Alex Martin Morris
Alex Martin Morris died October 27, 1996. He had the "Pyloric atresia" Herlitz variant Junctional form of EB and died at almost three months of age. Her mom Kristy misses him an awful lot.
Click Here to visit the memorial page Alex's mommy did for him
Logan Henry Braun
Logan Henry Braun was born August 28th, 1998 and died November 27th, 1998 at 3 months of age. He had the "Herlitz" Junctional form of EB and died because his airway blistered and he simply could not take another breath of air. He died in his mommy's arms as she was rocking him.
Her mom and dad,
Jim and Sheryl Braun, and his brothers Colton 7, Jeron 6, Samuel 4.5,
and sister Kendes 3.5 miss him more than words can say.
Ages of children as of 1999, two more EB free baby boys have joined the
family since Logan's passing.
Click Here to see a page made just for him
Mallory Hagler
Mallory Hagler was born June 18, 1998 and died March 4, 1999 at 8.5 months old. She had the "Herlitz" or Lethal Junctional form of EB and died from severe anemia and heart failure. She is missed every day by her parents, Chris and Jill. In her short life here, she brought many lessons and goodness to them and their family. Mallory now has a younger sister, Jody who is EB Free.
Landon Lee Turner
Landon Lee Turner was born March 30, 1997 and died August 4, 1997 at 4 months of age. He had the "Herlitz" Junctional form of EB and died from complications from it. His parents Lee and Jolene and his sisters Alexandra and Madeline (Alex and Maddie) miss him an awful lot.
Jamie John
Jamie John
was born December 7, 1984 and died July 11, 1998 at 13.5 years of age.
She had the Recessive Junctional form of EB and died from these complications
from it: respiratory arrest, pulmonary edema, severe protein energy
malnutrition, sepsis and wound infection. She had no skin on 90% of
her body when she passed away, and was in the hospital for 7 months.
We also remember her older sister
Jennifer Marie John
Jennifer Marie John was born September 24, 1983 and died November 30, 1986 at 3 years of age. She also had the Recessive Junctional form of EB, and died of infection and heart failure among other things. Her mom Tania, and her brothers miss them terribly.
Email Jamie and Jennifer's mom
Nathaniel Richard Miller
Nathaniel Richard Miller was born on April 30,2007 and died on June 20,2007 he was 7 weeks old. He had "Herlitz" Junctional form of EB. He died because his airway was blistered and could no longer breath anymore on his own. He also had two major infections the last five weeks of his life that he could not get rid of. He died in my arms while I rocked him after the Dr. removed his breathing tube. He lived for three and a half hours. He is missed greatly everyday by his daddy and mommy also his brother and sister (Brandon & Kristen) who live in Ohio, USA and everyone who knew him. He touched everyone he met. We know he is in a better place without anymore pain and suffering along with perfect skin!
Dear Mommy,I just wanted to let you know that I made it home.The journey was'nt an easy one, but it did'nt take too long. Everything is so pretty here, so white, so fresh and new. I wish that you could close your eyes and see it too. Please try not to be sad for me... Try to understand. God is taking care of me... I'm in the shelter of His hands. Here there is no sadness, no sorrow, and no pain. Here there is no crying, and I'll never hurt again. Here it is so peaceful when all the angels sing, I really have to go now- I've just got to try my wings!
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.
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
Clouds
may come, but clouds must go, and they have a silver lining.
for beyond them all, you know the moon and sun is shining.
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Last Updated: March
16, 2006