~Nicky's Realm~
Nicky's Fall School Picture, September 2006
9.5 years old
Nicky is my precious boy. He was born November 25, 1996. I absolutely adore him!!
Unfortunately he has a skin blistering disorder called "Epidermolysis
Bullosa" or EB for short. He scratches/blisters extremely easily.
This is a devastating and life-threatening condition that has no cure
as of yet. He has one of the very worse forms that DO NOT improve with
age, called Recessive Dystrophic. His form actually gets worse with age.
His fingers and toes web and contract, he has a g-tube to supply nutrition
to him, as his esophagus is in bad shape. He has to be covered with bandages
from head to toe to prevent new wounds and protect the existing ones.
Regardless of his condition, Nicky is my light and inspiration, the love
of my life.
December 2007
Nicky weighed 68 lbs last
time I put him on our digital scale, and he is about 56in tall. Not too bad for a kid with RDEB, thanks without a doubt to his
g-tube. He gets night-time feedings of Nutren
1.5. He will take a bite of this and that, but a bite is all
he takes, never more.
Nicky started 6th grade on August
30th... a big step for him. Things went sour fast, the school was non-cooperative and non-caring, so he's now
being home schooled. He's done so well in
school during his elementary years! He made the Super Intendent's Honor Roll for the
second and third trimester of 3rd grade (straight As!!) and has made the Principal's Honor Roll for the every trimester of 4th
grade and 5th grade. The great Doctors at CHLA have been
keeping his anemia in check and his numbers have improved greatly. The
next blood transfusion will be in the spring. His last ones were in July/August.
Nicky is truly an extraordinary little kid...
everyone always comments how happy and smart he is. He's a master of quite a few Wii and Game Cube games, like any and all the Mario
Party games, Mario Kart, Super Mario Sunshine and Super Smash Brothers among many, many
other Mario games! He LOVES Mario! He got such a kick when I
told him that his great-grandfather (my dad's dad!) was named Mario!! LOL.
He loves his Game Boy too (well, he would correct me here, it's actually
his 'DS'), we can't leave the house without it! His room is decorated with
Mario stuff, it's a hoot. He watches all kinds of TV
shows nowadays, his favorite is Full House. I've even caught him watch Roseanne! I laughed since that
was one of my favorite shows in the eighties and my step-daughter loves
watching re-runs too! What's with Roseanne? LOL. I play two games with him, Mario Kart
& Mario Party. I try to play with him everyday, but sometimes I can't.
It's a real great way to bond.
Nicky has went through 8 dilatations so far, 3 in 2000, 3 in 2001, one in 2002 and
the last one was in October 2004. He tells me he does not need another one
right now, I will let him tell me when he feels like he's going to need another. We found that if he takes a prescription strength Zantac his throat stays
open for a longer amount of time because it keeps the acids down that
scar his esophagus further. The dilatations are unfortunately necessary,
as when he needs one he can no longer swallow anything that isn't liquid and so his throat
needs to be 'enlarged' before it gets to the point of him not being able
to swallow his own saliva like he did before his first dilatation in March
2000.
The last hand surgery was done in the summer of 2002 on his left
hand, the second on
that hand. Because of the wrapping and daily straightening exercises,
he will most likely not need one for several years to come. His right
hand is doing okay, but it's been since 1998 that he's had a surgery
on that one, and the index and middle finger will probably need to
be straightened out sometime soon. Nicky said to go ahead and make
arrangements with the doctor, so we'll see. It's always a challenge to get
the insurance to pay to a Doctor that actually has done this surgery
before! Did I mention I HATE insurance companies?
Please Help!
If you would like to help us
take care of Nicky's Medical Needs, we're always taking donations. There
are many things that we always need to purchase for him that are not
covered by insurance or other programs, from special ointments and
dressings to medicines and the like, including diapers and much more. Nicky also needs some major dental work-we expect that bill to
be in the thousands.
We appreciate
any amount! Thank you so much for your kindness and generosity!
THANK
YOU FOR YOUR SUPPORT!!!
Please read this touching
letter from an EB gmom (grandmother). Debby Lilly's grandson has the Recessive
Dystrophic form of EB. Debby sent this letter to every congressman all
over the country for which she could find an address. Another EB Grandmother,
Linda, posted it on her website.
Click on the title for the full story.
Imagine That
By Debby Lilly
Imagine you have waited
nine months and the magic day has arrived. Imagine you go to the hospital
to be surrounded by smiling faces telling you how wonderful this is going
to be and you wait and wait and finally the magic MOMENT has arrived.
You push and scream and yell the appropriate curse words and think it
is never going to end and then, there he is, the little boy you have prayed
for and dreamed of for so long. Now imagine that the smiling stops and
the calm, reassuring look on your doctor's face is replaced by one of
confusion and concern. This is supposed to be the happiest day of your
life and suddenly in a blink that is all over. Joy is replaced by fear
and your dreams with nightmares at the sound of the words - There is something
wrong here. Hours later, you are told that your child has been born with
a genetic skin condition called Epidermolysis Bullosa. Visions of basketball
games and rough-housing on the living room floor fade and blur. The good
news is your baby is alive, the bad news is nobody is sure for how long.
But he may live you beg. Yes, but life will be torturous, never-ending
pain.
The Special
Child
The child, yet unborn,
spoke with the Father.
"Lord, how will I survive in the world?
I will not be like other children.
My walk may be slower, my speech hard to understand, I may look different.
What is to become of me?"
The Lord replied to the child,
"My precious one, have no fear. I will give you exceptional parents.
They will love you because you are special, not in spite of it. Though
your path through life will be difficult, your reward will be greater.
You have been blessed with a special ability to love and those whose lives
you touch will be blessed because you are special."
My child has a skin
problem called Epidermolysis Bullosa, the Recessive
Dystrophic kind.
This is a long fancy name for a condition of the skin where a certain
protein called "collagen", which acts as a glue between the
epidermis and the dermis, is missing or the body simply does not produce
enough of it. Because the skin is missing this protein, blisters develop
easily. This can occur after a slight bump of the skin or scratch, anywhere
on his body, including his mouth and esophagus. Many of these blisters
are painful, and will heal with scars. The scars cause deformities of
the extremities which lead to disability. My child always wears bandages
to protect the healthy skin and allow healing of wounded skin.
This condition is not contagious. You cannot catch anything. Unfortunately,
there is no cure for EB right now, but many doctors are working to find
help for EB. If you wish to donate money or to find out more about EB,
we would appreciate your contacting the following national organization
which is looking for a cure.
Thank You for your concern.
EBMRF
130 Sandringham Road
Piedmont, CA 94611
Tel (510) 530-9600
I don't know of any disease that children face that causes such long term
suffering. You know, you have children that have things that take their
lives, but, this disease, they suffer emotionally and physically for a
long long time before they either die or...well, and actually in the severe
forms that's what happens.
Lynn Anderson (President of EBMRF)
Some may own castles
on the banks of the Rhine,
and hire an orchestra each morning at nine.
But richer than I they will never be...
I had a mom who made Web pages for me!
Navigate
this kingdom with the transporter!
Playing: It's
a Small World
Last Updated: February
10, 2007
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