Hello, my name is Wrenley Joann Spence  I was born August 11, 2020. I was diagnosed with severe hydrocephalus when my mom was 31 weeks pregnant with me. The doctors questioned whether I would be able to see, hear, walk or talk. It was a very scary time for my parents, as you can imagine. My mom was sent to OU Children’s Hospital in OKC to deliver me by c-section at 38wks. When I was 2 days old, I had surgery to insert a shunt into my brain to relieve the pressure of cerebral spinal fluid from my head. I had a little trouble eating so I had surgery to insert a g-tube to help me get the nutrition I need. I was also born with a cleft palate of the soft tissue but it has healed on its own except for two little muscles which I will have surgery on in October! Before I was released from the NICU I had genetic testing and found out that I am super unique! I have what is called Ring Chromosome 18. I have a deletion on both sides of my 18th chromosome and it made a ring (I am 1 in about 125 people in the world). Being born with ring 18 and hydrocephalus I have to see a lot of doctors including cardiologist, endocrinologist, otolaryngologist, gastroenterologist, epileptologist, plastic surgeon, neurosurgeon, neurologist, geneticist, ophthalmologist, orthopedic. Along with physical therapy, occupational therapy, feeding therapy, chiropractor and massage therapy. (Told you I’m super special!)
Over the past year I have had Infantile Spasms and a few different types of seizures. We’ve tried all kinds of medication but ultimately it is CBD that has almost completely stopped them but it’s not covered by my insurance. I also have hip dysplasia which is why I wear a brace but  it is getting better everyday! Despite all of this I am thriving and getting stronger every day!