Condition: Prader-Willi Syndrome, Epilepsy
City, State: Auburn, WA
Club: Rogers High School Key Club Sparrow Club Service Hours:
Date Adopted: 2/25/2015
Elijah came into this world via emergency C-section, weighing 5 pounds 1 ounce and was 17 inches long. He had a pretty rough entrance into this world, but he proved then just how strong he was. He spent his first month and a half of life in the hospital. It was during that time, when he was 3 weeks old, that we received his diagnosis of Prader-Willi Syndrome (a deletion on the 15th chromosome). This syndrome affects 1:15,000-25,000 births. PWS typically causes low muscle tone, short stature, cognitive disabilities, and insatiable appetite ( constant feeling of hunger). Because of the very low muscle tone, he was unable to suck, swallow and at times, he was unable to breathe on his own. Elijah was also diagnosed with 20p13 (a deletion on the 20th chromosome). He is only one of five documented cases with this specific deletion so there is little information known about what to expect long term.
After Elijah was home from the hospital, we did not know what to expect. It was one day at a time. He was on a 24 hour heart monitor, breathing machines for severe sleep apnea and a time released feeding pump. After being home for a short while, we connected with the Birth to 3 program at Children's Therapy Center, an awesome program for babies with special needs-Elijah received speech therapy, physical therapy, and occupational therapy at home until he was 3. At the age of 3, he started in the ECE programs in the Auburn School District. He continues to get his therapies at school and through the therapy center. Also at 3, Eli was diagnosed with Epilepsy after having a severe seizures, which cause his heart to stop. He has been seizure free for 3 years now and stable on medications.
Elijah continues to get stronger each day and is reaching milestones. He is now attending an SLC (Structured Learning Center) classroom and is doing very well. We continue to live one day at a time and enjoy every minute we have together.