|
Reilene and Nikkolas Rivas 
Welcome to our Children's Web Page. It has been provided to keep people updated about Reilene and Nikkolas!
Reilene and Nikkolas have a rare genetic disorder called MPS I-Hurler-Scheie Syndrome. They are missing an enzyme called Alpha-L-iduronidase. My children receive a synthetic enzyme called Aldurazyme. They receive this medicine through IV every week.
Reilene loves to play dress-up, sing, dance,and be in charge! She also loves to write letters to the people she loves, not that we understand what she writes, but she lets us know what it says! Reilene is 10 years old. Reilene was dx with Hurler-Scheie Syndrome in January 2002 when she was 4 years old.
Nikkolas loves to play video games, basketball, baseball, I guess any game that has a ball! Nikkolas also loves to play with Hot Wheels. He likes that he can put them in his pocket and take them wherever he goes. Nikkolas is 9 years old. He was dx with Hurler-Scheie Syndrome in January 2002 when he was 3 years old.
Journal
TUESDAY APRIL 22, 2008 OMG, I DIDNT REALIZE THAT I HADNT UPDATED THIS JOURNAL IN YEAR!! I GUESS TIME FLIES BY SO FAST...
NOT MUCH HAS BEEN GOING ON...FOR NOW CCS HAS BEEN PRETTY CONSISTANT ABOUT KEEPING THE KIDS ON TREATMENT, THANK GOODNESS!!
NIKK IS DOING FINE, STILL NO PORT FOR HIM. HE HAS THIS ONE GREAT VEIN THAT WONT GIVE UP!!
REILENE IS STILL HER SAME OLD BOSSY SELF!! SHE IS GRADUATING ELEMENTARY SCHOOL THIS YEAR. SHE WILL BE ATTENDING JUNIOR HIGH IN THE FALL. SHE IS SO EXCITED!! NEW SCHOOL, NEW FRIENDS!!
I KNOW I NEED TO UPDATE THE PICS TOO, LET ME JUST REMEMBER HOW AND I WILL LOL!!
GABBI
Read Journal History
Hospital Information: Patient Room: HOME HOME
Links: http://www.mpssociety.org/index.html NATIONAL MPS SOCIETY
http://pg.photos.yahoo.com/ph/jacalera@sbcglobal.net/slideshow?.dir=/187c&.src=ph NATIONAL MPS SOCIETY CONFERENCE 2005
http://pg.photos.yahoo.com/ph/jacalera@sbcglobal.net/slideshow?.dir=/a75d&.src=ph REILENE'S MAKE A WISH DISNEY TRIP DEC. 2005
|
|
