“When Lucy was born, she was blue and rushed to the NICU. She was then helicoptered to Lucile Packard Children’s Hospital Stanford for open heart surgery to repair a coarctation of the aorta, a VSD and a severely leaky tricuspid valve. After a successful surgery, she went into cardiac arrest and was placed on life support for 6 days until her heart could sustain her body again. She spent three months in the hospital where she was diagnosed with Williams Syndrome- which is a rare genetic disease that occurs approximately 1 in 10,000 births. With Williams Syndrome comes developmental delays, feeding problems and various medical issues, including serious cardiovascular problems. Since Lucys initial diagnosis and hospitalization, she has undergone seven more surgeries and been diagnosed with hypothyroidism, reflux, a bicuspid aortic valve, and pulmonary and pulmonary branch stenosis and is in the early stages of heart failure. Lucy is fed through a g-tube and monitored very closely by her team of doctors and we are awaiting her next open heart surgery to repair portions of her stenosis. She gets physical therapy and occupational therapy regularly.
Lucy is a beautiful, charismatic two year old with twinkling eyes and a smile that will brighten anyone’s day. We are so very lucky that she is part of our family!”