~EB Memorials~
Junctional
Page 3
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.
Ryan Malby
Ryan Malby was born on August 8, 1993 and died September 2, 1993 at almost 1 month of age in his mommy's arms. He was diagnosed with Pyloric Atresia and Junctional EB. He died from complications.... This is what his mommy wants to say to him: I can't begin to put into words how much I miss you. I love you, wanted you and needed you more than words can ever say, you will always be my baby and I will always be your mommy, I love you. The Wind Will Gently Whisper Your Name Until We Can Be Together Again. We love you, Mommy (Tammy), Daddy and little brother Alan.
Kalie Denae Daniell
Kalie Danae Daniell was
born April 25, 1992 and died on July 12, 1992 at 11 weeks of age. She
had the Herlitz Junctional form of EB and died from several complications
from it culminating in a cardiac arrest.
Her mom's words: "She was a happy little girl despite her condition.
She loved to pay attention to us when we talked and sang to her.
She was a blessing to our lives. We will always be thankful for
the eleven weeks that God allowed us to have with her."
Her parents, Rick and Lori, have since adopted two boys, Seth and Brendon.
Kalie will forever live in their hearts...
Carlos Famania Jr.
Carlos Famania Jr., born August 7,1999, lived to be almost 5 months. He passed away on New Years Day January 1st, 2000 @ Strong Memorial Hospital In Rochester, NY. He had the Herlitz Junctional form of EB, and he fought for a very long time from this disease. Carlos had 5 teeth and he smiled a lot especially at his mommy. Carlos shall be remembered forever by everyone who cared. Carlos b.k.a Strong Little Guy.....
Caylin Marie Saver
Caylin Marie Saver was born February 24, 2000 with the Junctional-Herlitz form of EB. She passed away on April 8, 2000 from complications due to sespis. She acquired an infection in her blood and skin. She passed away in the arms of her mommy and she was surrounded by her loving family.
Above is a picture of her
family.
A note to Caylin: Mommy, Daddy and big brother Taylor
miss you so much. Your memory will always live in our hearts and you
are never far from our thoughts. We love you "Babycakes"...
Kaitlin Michelle Patrick
Kaitlin Michelle Patrick was born on June 25, 2000 in Terre Haute, Indiana. She died on August 18, 2000 from the Junctional Herlitz form of EB. She will be very missed by her Dad and Mom (Michael & Becky) and by her big sisters Kelsey, age 5 and Kourtney, age 2 and also by all the people who knew and loved her during her 7 weeks of her life.
Lisa van Gerwen
Lisa van Gerwen she was born on Mai 1st 2000, with Herlitz Junctional EB and she passed away on July 17th 2000, 11 weeks old. We are so proud of her, in spite of the struggle against the EB she gave us so much love, the look in her eyes give us the strength to go on. We love her very much and miss her a lot. She will always be in our hearts.
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
No
act of kindness, no matter how small, is ever wasted. -Aesop
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Last Updated: 03/16/2006