Lily Korinne Voelkel was born on June 23, 2009 weighing 6 pounds, 13 ounces and measuring 19 inches long. Lily died on May 14, 2012 after almost 3 years of an exceptionally courageous journey of various medical conditions. She was a breath of fresh air – we had tracked and anticipated the arrival of this special little girl for so long, we knew there would be complications but we vowed to love her unconditionally no matter what the issue and to do everything in our power to provide the best life for Lily….she finally arrived..kicking and screaming and she was beautiful. Now the real journey would begin.
Lily was born with several congenital defects – the most major being complex congenital heart disease. At just six days old, Lily, had her first major open heart surgery – a top tier level heart surgery consisting of several procedures. As of May 2010, Lily had yet another top tier heart surgery to get her heart anatomically correct. In addition, she had to have an internal pacemaker placed.
Lily was born with several other anomalies to include cranio-facial deformities and optic deletions. Lily was trached and on a ventilator because she suffers from chronic lung disease. She had various stomach anatomy issues and feeding issues. She ate through what’s called a gj tube straight into her jejunum and ate half formula and half tpn and lipids straight into her veins through an IV port. She had serious immune system problems and was deaf-blind.
After confirmation of some of the above mentioned anomalies the genetics team sent for the blood gene test for CHARGE Syndrome. Weeks later – the test confirmed Lily indeed had CHARGE.
Lily battled with daily hurdles. She was 2 years old and in that time had spent 21 months of that in the hospital. She underwent about 25 different surgeries, struggled through many viruses and infections, continued to produce puzzling medical conditions – and – through it all, she fought off the medical problems – continued to smile – continued to show motivation and desire to learn, and proved her strength and spirit time and time again. She’s has been called an “enigma” and her medical team believed she was brought to them for a reason. They grew together.
Because of the long hospital stays Lily was behind developmentally. She operated at about a 6-8 month level. She suffered from hypotonia and coupled with her deaf blindness, she could not sit up at the time or communicate much at all. However, she begun rolling over and knew three important signs – “mommy,” “daddy,” and “want”.
Her big and loving sister, Eliana loved to hold her and dress her. She understood Lily was sick and that Lily would often times have to stay at the hospital.
Lily had a peace and strength about her that was unexplainable. When you were around her all the bad things in life just seem to disappear – time with her was truly healing. She would immediately imprint a smile on your face.
Her strength, example, and smile influenced us to create a foundation in her name to help as many children with similar complex medical issues in the world as possible. For now we are starting in Houston, Texas.