Scarlett R.
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.
