Support Rayven's Fight Against Sly Syndrome
Donation protected
Rayven was born at 35 weeks with multiple abnormalities found during mom’s pregnancy. With little to no life expectancy, she arrived via emergency c-section at 4 lbs 8 oz. Doctors were shocked as well as us, as we were told to prepare for the worse. After 18 days spent in the NICU and countless tests, our little fighter was strong enough to go home. Two weeks later, our world turned upside down. At 4 weeks old, we learned the devastating news: Rayven was diagnosed with MPS Type VII, or Sly Syndrome.
MPS, which stands for Mucopolysaccharidosis, is a group of rare, inherited disorders caused by the deficiency or absence of specific lysosomal enzymes. This type is so rare it affects 1 in 250,000 newborns. These enzymes are responsible for breaking down complex sugar molecules called glycosaminoglycans (GAGs). Without enough of these enzymes, GAGs accumulate in the body's cells, leading to progressive damage in various organs, tissues, and the brain.
Without treatment, she will not live a very long life. There is currently no cure; however, with treatment, hopefully Rayven’s life will be extended and improved. She will have to receive enzyme replacement therapy. Unfortunately, this will not pass the blood-brain barrier, which means she will require a stem cell transplant (bone marrow).
All of these treatments and procedures will be taking place at Cincinnati Children’s Hospital (2 hours from home). Rayven will undergo chemotherapy, infusions, and multiple procedures. These treatments will weaken her immune system significantly, which means that Rayven will have to isolate for as long as the treatment is required (close to 6 months). She is required to stay local during the duration of treatments as well, meaning we will have to relocate to Cincinnati for about 6 months.
This fundraiser has been created to help support Rayven and our family through this incredibly difficult time. The road ahead is long, complex, full of uncertainty, and emotionally and financially exhausting for our family. We are navigating this as best we can whilst also caring for Rayven’s older siblings at our home.
We’ve set a modest goal to help with immediate expenses, but this is just the beginning of a long journey. Your support, whether through a donation, a share, or simply keeping us in your thoughts means the world to us.
Alice & Kendrik
Follow Rayven’s journey
Organizer
Alice Mccutchen
Organizer
Clarksville, IN