Jaydn

Condition: Hurlers
City, State: OR
Club: Eagle Point High School Sparrow Club Service Hours:
Date Adopted: 8/15/2011

Jaydn's Story:
(11.4.11) Jaydn, a sweet-natured and social little girl, was born on May 18th, 2010. At 6-7 months old, Jaydn's parents noticed some things were not quite right. Jaydn's head growth was abnormal for her age and she seemed to have trouble hearing. She was also showing signs of scoliosis, which is a curvature of the spine. Tests revealed that little Jaydn has a rare, life-threatening metabolic condition called Hurler's Syndrome (also known as Hurler's Disease). Persons with Hurler's syndrome are missing an important enzyme that is necessary to break down long chains of sugar molecules. Without this enzyme, the sugar molecules build up in the body and damage organs, including the heart. Hurler's also severely affects both physical and mental development and it can lead to problems with the nervous system. Jadyn and her family travel to Portland often so Jadyn can see doctors and receive enzyme replacement therapy, which attempts to add a working form of the missing enzyme to the body, and is something that Jadyn will need on a regular basis for her entire life. Jadyn will most likely have a bone marrow transplant in January 2012, which is something that can sometimes help children with Hurler's. If a bone marrow transplant does happen, Jaydn will be in Doernbecher Children's Hospital in Portland for over a month and will have to remain in Portland for 2-3 months for easy access to doctors. Jaydn is Eagle Point High School's Sparrow for the 2011/2012 school year and this club is sponsored by The Kimmel Family Foundation. Money raised by EPHS students, through community service and fundraising projects, will be used to help pay travel expenses back and forth from Portland for specialized treatment and will also help with basic living expenses. Jaydn's parents would also like to use some of the Sparrow funds for special toys and educational technology and materials that will help develop Jadyn's ability to communicate.

sponsor(s):

The Kimmel Family Foundation
The Kimmel Family Foundation