~EB Memorials~
Junctional
Page 4
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.
Sophia Litynski
Sophia Maria Litynski was born May 7, 2001 and died February 9, 2002 at 9 months and 2 days of age. She had the Herlitz form of Junctional EB (still awaiting confirmation).
She died in her crib during an afternoon nap where she was surrounded by love from respiratory compromise, chronic anemia, and infection. Her eyes gave us the strength to fight for her and her life gave new meaning to ours. She showed us a bravery and love we will forever cherish. She will be forever loved and missed by her Mama, Jennifer and Daddy, Ernest and her big sister Amelia (EB free). Words can never express the love we will forever feel for this Sweet Angel from above.
The following was a verse written on Sophia's memorial cards that really touches our hearts:
God saw she was getting
tired,
and a cure was not to be.
So He put His arms around her
and whispered, "Come with Me."
With tearful eyes you watched her suffer,
and saw her slowly fade away.
Although you loved her dearly,
you could not make her stay.
A golden heart stopped beating,
hard working hands put to rest.
God broke your hearts to prove to you,
He only takes the best
The local paper here in Milwaukee ran a front page article on her (http://www.jsonline.com/news/nobits/feb02/20438.asp) after a reporter there read her obituary (http://www.jsonline.com/news/obits/feb02/LitynskiSophiaMaria021302.asp) we will forever be proud of our sweet little girl.
Lauren Marie Johnson
Lauren
Marie Johnson was born May 15, 1993 and
died October 13, 1993 at 5 months of age. She had the Herlitz (although
never confirmed) form of Junctional EB. She had a trach at 3.5 months
and a central line placed at 4.5 months due to failure to thrive. She
died from an infection caused from the central line.
We also remember her younger brother
Tyler Lauren Johnson
Tyler Lauren Johnson was born December 4, 1994 and died May 27, 1995 at 5.5 months of age. He also had the Herlitz form of Junctional EB (also never confirmed). He had a g-tube placed at 4 months old due to failure to thrive. His incision never healed and his tube came out. At this point he was so anemic and he caught an infection. He also died from infection and complications thereof. Their mom and dad miss them terribly.
Sarah Paige Comeaux
Sarah Paige
Comeaux, was born February 20, 2002 and died
April 5, 2002 of cardiac arrest. She was born with two evils, Junctional
EB and Congenital Heart Disease. As with Sophia, Sarah had beautiful
eyes. We thank God for our every remembrance of her.
Visit
Her Page Here
Eduardo Faria Lua Carneiro
Our angel, Eduardo Faria Lua Carneiro, was born in Rio de Janeiro, Brazil, on May 8, and died in September 7. He fought with all his strength against his disease. According the test which be done after his death, Eduardo had EB Junctional (we don't now exactly the type). He is our biggest treasure, the light of our eyes, the biggest dream of our finest dreams. That's why he will be never forgotten. We miss him a lot, especially his beautiful eyes. Through them, we managed to learn everything about pain, strength, love, and faith. We are sure that Eduardo became a God's angel, and will be, forever, our guardian angel.
Kaël Fontaine
Kaël Fontaine was born September 23rd, 2004 died December 17th, 2005 at the age of 15 months. He had
Junctional EB but the subtype is still not confirmed. Kaël loved life and was
smiling all the time... He showed us so much about love and life...
Kaël is now our little butterfly-angel... he flies freely without pain... and watches over us and his dearly big brother.
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: 05/10/2006