Meet Lily. She's an 8-month-old trisomy 18 survivor. For those that do not know what that is, it's a genetic disorder. She has an extra copy of the 18th chromosome. This controls the proteins in her body as it develops. She has holes in her heart that push unoxygenated blood into her lungs. This requires her to have supplemental oxygen. She has very high pulmonary hypertension, which is an untreatable lung disease. This condition is deadly; most babies do not survive birth or their first birthday. It causes developmental issues throughout the body, affecting organs and brain functions. With the help of many hospitals, this diagnosis is being treated, and the babies are thriving, being given the chance to live. Nobody can ever prepare you and your family for what's to come.
We have fallen into financial hardship, having sold anything we can just to pay bills. Using up all the resources available, but it's just not enough. In the past 7 months, we have been to 3 different hospitals in 3 different states with stays of up to a month or longer. Traveling back and forth until there is a room available at a Ronald McDonald House. Thank God for those; this gives us the availability to be by our daughter's side.
Her condition has worsened recently, she has gone into cardiac arrest 2 different times, both being legally dead for over 10 minutes. Her will to live has brought her back to us several times. We have stood at her bedside, tears flowing, mourning the loss of our baby too many times. Having her breaths given to her by a machine. Then by some miracle, her eyes open and the light in her eyes becomes bright again.
It is not fair that a parent should choose between working and being there for their child. A child who has never touched grass, has only felt the wind on her face as she is moved from one hospital to another. A sweet, loving child who has spent her entire life in a hospital bed. We are asking for help to raise money for our bills as we want to spend as much time with Lily as possible. Her life is not promised; her time may be cut short. We need to be there for her, to give her strength, to give her love.