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 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!She loves Hannah Montana, HSM, and Camp Rock, especially the Jonas Brothers. Reilene is 11 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! He loves to watch wrestling on tv. His favorite wrestler is John Cena. He has John Cena shoes which he wears everyday!! Nikkolas is 10 years old. He was dx with Hurler-Scheie Syndrome in January 2002 when he was 3 years old.

Journal

Wednesday, April 29, 2009 10:19 PM CDT

AS I ALWAYS SAY, SORRY FOR NOT UPDATING AS OFTEN AS I SHOULD...

SINCE MY LAST UPDATE MY MOM HAS PASSED. DEC 3, 2008. THAT HAS BEEN SO HARD FOR ALL OF US. SHE WAS THE OTHER PARENT IN MY HOME. THE ONE WHO HAS TAKEN IT THE HARDEST IS REILENE. SHE WAS SO CLOSE TO HER. I'M GONNA END THERE BECAUSE THEN I'LL START CRYING.

REILENE FINALLY GOT HER NEW PORT. ON THE DOWN SIDE SHE IS STARTING TO SHOW SOME REGRESSION. SHE IS HAVING TROUBLE BREATHING AT NIGHT. AT SOME POINTS IN THE NIGHT HER SATS ARE DROPPING TO THE 60'S. SO NOW SHE HAS TO USE A BI-PAP MACHINE WHEN SHE SLEEPS.

NIKK HAS BEEN DOING GOOD EXCEPT NOW HE IS HAVING MORE TROUBLE WALKING. HIS LITTLE LEGS SEEM SO STIFF.

I KNOW THESE ARE THINGS THAT ARE TO BE EXPECTED BUT ITS STILL HARD TO DEAL WITH. JUST SEEMS LIKE ONE STEP CLOSER.

THE ONLY REALLY GOOD NEWS I HAVE TO REPORT IS THAT RONNI FINALLY HAD HER BABY ON FRIDAY APRIL 24 2009. 8:35 PM.

JAYDON RAPHAEL RIVAS VERDUGO 6 LB 14 OZ 19 INCHES.

LOVE AND HUGS TO ALL,

GABBI

Links:

E-mail Author: jacalera@sbcglobal.net

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 5014 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.