Condition: 15q13.3 microdeletion syndrome
City, State: Grants Pass, OR
Club: Grants Pass High School REACH, River’s Edge Academy Charter School Sparrow Club Service Hours:
Date Adopted: 10/25/2019
Scarlett's Story:• Scarlett is a sweet and happy 4-year-old girl who was born with 15q13.3 microdeletion syndrome. She is missing chromosomes that are vital to the body’s ability to function properly.
• This condition causes her to have many seizures (up to 100 per day). She was diagnosed with epilepsy at the age of two.
• Scarlett is required to take many seizure medications on a daily basis. She also has undergone a Vagus nerve implant surgery (also known as a pacemaker for the brain).
• Her condition is rare and it varies in each patient. This makes it very difficult to know exactly all the challenges Scarlett will face in her life.
• Scarlett has had many severe challenges related to eating. She has a condition called FPIES, it is a food protein intolerance.
• Scarlett had a g-tube (feeding tube) installed when she was 3-years-old that resulted in many infections and left her hospitalized several times.
• Scarlett is currently being monitored for concerning nocturnal seizures that may require further surgeries.
• In spite of all her medical challenges, Scarlett loves life. She loves her family, the beach, and her favorite thing is Elmo. Her family has hopes of getting her a seizure dog in the near future.
• Scarlett will be adopted as a Sparrow to Grants Pass High School. GPHS students will have the opportunity to work hard to raise money for Scarlett’s ongoing treatment through sponsored community service.