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Lauren's turf
Welcome to my site-izzle! I hope you guys enjoy looking around and getting to know me...
I am 18 years old and have a very rare and severe neurological-metabolic disease called Hereditary Coproporphyria... (try saying it ten times fast.) My form of Porphyria effects the nervous system in my body causing me severe nerve damage, skin photosensitivity, a paralyzed stomach and a slew of other problems. I can't walk or use my left arm... however, so far my right arm has not been effected **knocks on wood really hard** I receive hematon treatments through my port-a-cath (port) every three weeks for five days at a time. This treatment is to try and lower my porphyrin levels and prevent a severe acute attack. I can't eat and am fed through my J tube in her tummy. That's the short version of my story...
You can learn more about Porphyria by visting the American Porphyria Foundation website, and the other links on my site!
Please sign my guestbook too :-)
"Live as brave men; and if fortune is adverse, front it's blows with brave hearts."
- Cicero
"What lies behind us and what lies before us are tiny matters compared to what lies within us."
-Ralph Waldo Emerson
"Hours pass into days
and time slips away,
but the words we speak
and the things we do
touch the lives of others
and live on forever."
-Emily Matthews
"Strong is FIGHTING. It's hard, and it's painful, and it's everyday. It's what we have to do."
-Amends
THE FIGHT
With courage amd strength we fight the good fight,
all day, everyday, through day into night.
Our battles are lonely, confusing and trying,
all the time so determined not to think about dying.
But we fight the good fight, and we know we can win,
for our will to survive really does lie within.
We hold our heads high, and we live for today,
we always are trying to keep our illnesses at bay.
Through good times and bad we keep our futures in sight,
for we will not give up, we fight the good fight.
-Lauren Henderson
**NEW PICS ADDED TO PICTURETRAIL ALBUM 1/8/04**
LAUREN'S SMILE QUILT!
LAUREN'S QUILT OF LOVE!
DISCOVERY HEALTH - MORE PORPHYRIA INFO
THE STARBRIGHT FOUNDATION is a non-profit organization dedicated to making the lives of sick kids and teens better. They created Starbright World, which is an amazing online community for kids and teenagers with serious illnesses or injuries. If you know a kid who is sick and could use Starbright World, please contact them, it really is amazing. I'm featured on Starbright's page under, "Kids connecting with kids!"
**WHILE YOU ARE HERE, PLEASE VISIT MY FRIEND'S PAGES!**
ALYSSA'S PAGE (ALL leukemia)
COURTIE'S PAGE (Interstitial Cystitis)
SPENCER, AKA SKID'S PAGE (Cystic fibrosis)
MOLLY'S PAGE (Total Ganglion Hirchsprungs)
ADAM'S PAGE (Hydrocephalus)
SKYLAR'S PAGE (SMA type 1)
MJ'S PAGE (SMA type 1)
AMY'S PAGE (Osteosarcoma)
KATELYNN'S PAGE (Carcinoid Syndrome)
LINDSEY'S PAGE (Burkitt's Leukemia)
^J^ ANGEL CODIBUG'S PAGE ^J^
KATIA'S PAGE (AML leukemia)
CASSIE'S PAGE (Myalgic Encephlopathy, M.E.)
JACKSON'S PAGE (Unknown neuro-muscular disease)
CHRISTINA'S PAGE (AML leukemia)
RACHELJOY'S PAGE (Cerebral Palsy, Downs Syndrome, intractible seizures, congestive heart failure, and cardio pulmonary arrest)
CURE PORPHYRIA ORGANIZATION!
The QUILTING ANGELS is a wonderful organization that makes real quilts for sick kids. Lauren is one of the featured kids for June. To see her page, click on "New kids." Also if you can sew, feel free to add a block to Lauren's quilt, or another kid's quilt!
Click here ADOPT A KID'S SITE! to see a great site with tons of links to other caringbridge kid's pages. Each kid's site is "adopted" by a person who visits the child's page and signs their guestbook often. Feel free to adopt a kid's site if you can! When you click on this link, once you get to the main page just go to where it says "adopt a kid's" on the left.
Facing the Future
Every journey begins
With but a small step.
And every day is a chance
For a new, small step
In the right direction.
Just follow your Heartsong.
-Mattie Stepanek
<![CDATA[<bgsound src="http://www.msealsmusic.com/msealsmusic/user/music/Good Charlotte - Hold On.wma" loop=1 hidden="true">]]>"You can turn painful situations around through laughter. If you can find humor in anything -even illness- you can survive it."
-Bill Cosby
***Current song***
"Hold on" by Good Charlotte
Hold on if you feel like letting go
hold on it gets better than you know
The days, you say they're way too long
and your nights, you can't sleep at all
and you're not sure what you're waiting for but you don't want to no more
and you're not sure what you're looking for but you don’t want to no more
but we all bleed the same way as you do
and we all have the same things to go through
Hold on if you feel like letting go
hold on it gets better than you know
don’t stop looking your one step closer
don’t stop searching its not over
hold on
What are you looking for
what are you waiting for
do you know what your doing to me
GO AHEAD
what are you waiting for
Hold on if you feel like letting go
hold on it gets better than you know
don’t stop looking your one step closer
don’t stop searching its not over...hold on
Journal
Tuesday, June 29, 2004 0:59 AM CDT a new day...
okay so check it...over the past few months i've been getting up in my new powerchair a lot. we ordered portable pumps and stuff and things have been going really well. i've had a lot of friends in town lately and it's been a ton of fun. i have a wheelchair ramp so i can now take "walks" at night. it's amazing. i had forgotten how beautiful the outside world is. hematon is still every three weeks and, knock on wood, my port and tummy tube have been working well.
i apologize for not updating in so long...things have just been really busy. morgan turns sixteen tomorrow...my birthday's july fourteenth, my mom's is on the thirtieth. needless to say, it's a busy few weeks up in the lauren's crib lol. i cannot believe my baby sister is going to be SIXTEEN years old...come to think of it, i can't believe i am going to be NINETEEN. amazing how time can fly, huh?
my goal is now to get me to the point where i can travel. i've missed that a lot. i can do it, i just have to be determined...which i am. i can't wait to go to Los Angeles...WOOHOO! heheh.
lots of love and prayers going out to my caringbridge family and all my homies who are so beautiful and supportive and caring. i love you all. *muah!*
hope everyone is doing well. i'll write more soon!
taking things one day at a time...
~laurenzo :-)
Read past journal entries
Hospital Information: Saint Luke's Hospital
Kansas City, MO
Conan says................."Lauren's site is cool my babies!"
Links:
http://www.faculty.fairfield.edu/fleitas/contents.html Bandaids and Blackboards, Lauren's story and alot of other kids stories are included on this site. Very informative!
http://www.porphyriafoundation.com The American Porphyria Foundation
http://www.neuro.wustl.edu/neuromuscular/nother/porph.htm "Neuromuscular," a very good site to get more in depth information about Porphyria.
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