~EB Memorials~
Junctional
Page 2
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.
Brogan Ayre
Brogan Ayre was born on March 28th, 2000. She was 7 weeks early weighing 4lb 3oz. She died on February 5th, 2001 at 10 months old from complications. She had Junctional EB with pyloric atresia. The pyloric atresia means stomach blockage. This form of EB is exeptionally rare. She put quite a fight for life in her short 10 months, and will be forever remembered and loved by all. Her mom Diane and dad Paul miss her more than words can say.
The Following two poems were written for Brogan by her 11 year old cousin Amy. The first one was written when Brogan was 9 month old. The second one after her passing.
****~***
We prayed for a miracle
and finally we were blessed
But when she first arrived with us she was in quite a mess
So we picked up all the pieces and but them back together
And when we looked into her eyes we knew she'd live forever.
We pray that God will find the love to make her better just maybe
But one thing is for sure she'll always be our special baby.
****~***
Our baby is an angel
now,
She’s happy and carefree,
Our baby is with God above,
She’s where she wants to be.
She wouldn’t want us to be sad,
And so we shouldn’t weep,
For in our hearts we’ll always know
Our baby’s gone to sleep.
Click Here to visit her memorial page
Click Here to visit her memorial page @ Linett's website
NicholasHunter Smejkal
Nicholas Hunter
Smejkal, was born and died on March 7, 2001. He had Junctional EB.
And for lack of understanding, they say they really do not know why
he died or especially died when he did. He past away two days before
he was supposed to be born.
My little angel Nicholas, I think of you always and you are always in
my prayers. I will wish you well and I will one day be with you again.
Matthew Jake Archuleta
Matthew
Jake Archuleta was born June 9, 1998 and
died November 11, 1998 at 5 months of age. He had the Herlitz Junctional
form of EB and died from infection and respiratory failure.
He is missed very much by family and friends and he is always in his
mom's heart.
April Ann Stumpf
April Ann Stumpf was born on December 24, 1996 and died on May 21, 1997 at the age of 5 months from JEB Herlitz. Her life has given us a stronger meaning to our lives. We have learned to love more, care more, treasure life more, and not to sweat the small stuff. Thank you April for the wonderful gift your life has given us!
Coleby Brystal Myers
Coleby Brystal Myers was born on October 28, 1998 and died November 7, 1998 at 10 days old. She was diagnosed with Pyloric Atesia-Junctional EB. She died from complications (her kidneys shut down) from her second surgery to correct her stomach blockages, in her daddy's arms as he rocked her and sang to her. Her parents Tracy & Jayme love and miss her very much. She is and always will be their greatest blessing.
Click Here
to see a page made just for him
Thomas Isaac Schossow
Thomas Isaac Schossow was born on the 24th June 2001 and passed away July 16th, 2002 aged 1 year and 3 weeks. He had Junctional Herlitz EB and died from complications. Thomas's eyes spoke more words than you could ever imagine, through his eyes came his happiness, love & pleasures and also his pain and sadness. The things in life we take for granted were the greatest joys in Thomas's life. He filled our hearts with love and gave us a lifetime of memories, that will never be forgotten. He is missed terribly by his mother, Alison, his daddy Dale and his big brother Ryan.
Jaylin Elizabeth Pare
Jaylin Elizabeth Pare was born on September 20, 2007 and passed away October 7th, 2007. She had Junctional Herlitz EB and died from complications in Safford, Virginia.
Angel Dust
by SlaveToTheMusic
Let the
angels sweep my child and hold her to the sky,
Gently rock her to sleep
with a sweet babies lullaby,
Hold her in your arms as a halo floats
above her head,
When she falls asleep lay her upon daisy flower
bed.
Play with
her on clouds as she giggles with such delight,
Please be careful not
to wake her as she is afraid of the night,
Watch her eyes glisten with
the color of beautiful blue,
When she gets her wings make sure her
hearts not askew.
Feed her
vanilla custard, As it is her most favorable treat,
White her favorite
color, wear slippers upon tiny feet,
Protect her with your presence,
make sure she is loved,
Mittens upon pink fingers, through winter keep
them gloved.
Throughout
cherub heaven will my precious daughter glide,
Forever in my aching
heart shall this angel always reside,
Cloaked beyond magic, in a world
where I can not hold,
Let the memories of my daughter forever be
told.
WHAT
I WOULD GIVE<3
by XxBaBBlinGXXBrOOkExx3
I think of
that day; my vision blurs & my throat starts to close
I'm trying to
stay strong but my weakness seems to show
What I would
give to stroke your hair
Grab ahold of your hand, to know that you'll
always be there
Looking back
a year from today
I lost a big part of my life; He took you
away
What I would
give to gaze into your eyes
So my reflection could show thoughts of you
are always crossing my mind
I miss you
so & there is not a day that goes by
Where I don't think of you
& pretend to try
To keep my composure; to not break down &
cry
What I would
give to touch your lovely face
To be surrounded by your love & your
sweet embrace
When I think
of your soft smile & all the love you gave
I know your place in my
heart will never fade
What I would
give to have just one chance
To play a never ending song so you & I
could dance
It's times
like these I ask myself why
He chose you to take to His home in the
heavenly sky
What I would
give to get the opportunity to rewind to the past
Where all of our
memories could come alive & forever last
Now your my
guardian angel, always there by my side
Although you are not here, your
soul is coming along with me for the ride
I just wish
you could give me a sign, to let me know you're okay
To give me one
less thing to worry about each and everyday
In my
heart you will stay, along with the memories too
& always remember
that never in my life will I ever forget you
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
In
teaching others, we teach ourselves. -Proverb
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Last Updated: 03/19/2007