Meet two year old Emaleigh Blankenship. Like most toddler girls, she loves dancing, playing with baby dolls, and watching her favorite shows on television. At the moment, her favorite is the Disney cartoon “Jake and the Neverland Pirates.” She has a twin brother named Michael who is one minute older. They were born after only 28 weeks and one day gestation.
Emaleigh’s Facebook page‘s information section states the following:
Abnormalities were discovered with Emaleigh’s feet during the standard second trimester ultrasound, although the extent of her malformations, were not fully recognized until after birth. Unable to obtain a diagnosis, we began researching hospitals that specialized in Overgrowth disorders. After traveling to Boston Children’s Hospital in April of 2010, Emaleigh was officially diagnosed with CLOVES syndrome. […] December 2011, we found that Emaleigh’s lesions in her kidneys (yes both kidneys) are forming into Wilms tumor. Wilms tumor is a type of kidney cancer in children. She started her first round of chemo on 1/10/12 and is on an 18 week scheduled with work-ups every 6 weeks to check her progress.
What is CLOVES syndrome?
Congenital (which means present at birth)
Lipomatous (which means pertaining to or resembling a benign tumor made up of mature fat cells)
Overgrowth (which means there is an abnormal increase in the size of the body or a body part)
Vascular malformations (a term used to refer to blood vessel abnormalities)
Epidermal Nevi (the medical term for sharply-circumscribed and chronic lesions of the skin and benign by definition)
Spinal/Skeletal Anomalies, Seizures, and/or Scoliosis.
Emaleigh’s parents, Adrienne and Chris Blankenship, co-founded the CLOVES Syndrome Foundation in the hopes of improving the lives of CLOVES patients by funding overgrowth and vascular anomaly research. Their mission statement also says, “Our foundation is committed to raising public awareness and and providing member support by offering educational literature and resources while also establishing support networks within the medical and overgrowth communities.”
I wrote my first Kourageous Kids story for Emaleigh last week. I have followed her on Facebook since the beginning of this year, and I really wanted to write her a story. I was delighted when I was given the green light. I hope the story I wrote for her makes her feel as special as she is, and continues to make her feel special as she grows older and more self-aware. I had the idea to write her a story about a treasure hunt. Her brother Michael goes missing in the story, and Emaleigh, the hero, finds him shut in the dryer (thanks, Danielle Drake, for the idea!). Their mama is so relieved that she gives them both a treat – ice cream sundaes, despite the fact that it’s just after breakfast.