I
am not an organization, or a business, I am the mom of a child with
this dreadful disorder.
Click here to meet my son Nicky, pictured here on the left,
my inspiration. His big brother and my first baby,
Alex, was stillborn at full term; he also suffered from
EB, although we did not know it at the time, but was most likely
the reason for his demise. Nicky
has one of the very worse forms of EB 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 basically ruined beyond repair
due to all the wounds and scar tissue. He has to be covered with
bandages from head to toe to prevent new wounds and protect the
existing ones.
If a cure is not found, he will not reach his 30th birthday, as
most patients with Nicky's form of EB succumb from skin cancer,
anemia, heart failure, infection and a variety of other complications.
I started this
website in 1997 hoping to inform people about EB... and, it kinda
grew from there. As the story goes, Nicky's EB Info Corner went
from being one single page in late 1997 to becoming EB Info World
and 145 pages as of January 2004. I hope you will find this website
useful, and please feel free to offer
suggestions.
Brenda,
a wonderful soul and also mom of a child with EB like Nicky (Jonathan,
pictured on the right) helps me with the website and the mailing
lists that now comprises over 200 families worldwide. Click
here to visit her website and meet her family.
Please be patient
with the graphics and music as they download, they are there to
enhance your experience... because, to show you how devastating
EB is you need to experience it, and the graphics, the music and
the layout will make you never forget this website when you leave.
Remember... good things come to those who wait ;-)
Make sure
to bookmark us or even make us your start page by clicking below.
If you wish to
donate money or to find out more about EB, we would appreciate your
contacting the following national organizations which are looking
for a cure.
Thank You for your concern.
EBMRF
130 Sandringham Road
Piedmont, CA 94611
Tel (510) 530-9600
DebRA
of America, Inc.
40 Rector Street, Suite 1403
New York, NY 10006
Telephone: (212) 513-4090 - Fax: (212) 513-4099
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 the Epidermolysis
Bullosa Medical Research Foundation)
Congrats! I
can not think of a better site to award then
yours. It is well done, informative and a true testament to your
love
and desire to education, inform and support other families effected
by EB.
Sincerely, Lisa
Mills
I am honored
to present you with the Facing Challenge Award for your website.
The contribution you are making to the lives of many is valuable
and appreciated.
Heartfelt thanks for all you efforts.
Regards, John Smith (Facing Challenge Award)
Before this date,
2247 guests visited this page since it first went up in December
1997.
The real
voyage of discovery consists not in seeking new landscapes but in having
new eyes. -Marcel Proust.
Website maintained and graphics by Princess
Silvia | Sleeping
Angel Creations and Services | Last Updated: December 26, 2004