At our 28 week ultrasound appointment, while we were pregnant with twins, our doctors gave us the devastating news that our daughter, Jacoby, was critically ill.

Jacoby was diagnosed with non-immune hydrops fetalis, a severe, life-threatening condition in which abnormal amounts of fluid build up in two or more parts in the body of a fetus or newborn. Jacoby had accumulation of fluid in her chest cavity, around her lungs, and within layers of skin causing severe edema (swelling). She was given a 5 percent chance to make it to a live birth, and if she lived, another 5 percent chance to survive. We were completely crushed, feeling helpless knowing no medical heroics could be taken as it would risk the life of the Jacoby’s healthy twin Sister, Jenna.

On June 1, 2013, at only 31 weeks old, Jacoby was delivered. Jacoby was born 2 pounds heavier than her twin Sister Jenna - all fluid, her body swollen and skin stretched. Jacoby has to endure several chest tubes to drain the fluid which was restricting her breathing and lung development. After several months, and very good progress, Jacoby was still the sickest child in the NICU. Jacoby endured a number of life-saving procedures, including two evasive surgeries on her left and right lung. Jacoby could also never extubate and breathe on her own without the use of a ventilator, so a tracheotomy was placed to help Jacoby breathe. Jacoby spent 10 months in the Cleveland Clinic Children’s Main Campus NICU and 6 months at the Cleveland Clinic Children’s Hospital for Rehabilitation before finally going home.

Jacoby is 6 years old and has such a JOY for life. She's been ventilator-free for several years and breathes on her own. Jacoby uses leg braces to assist with walking. Even though she is mostly nonverbal, she is learning new words every day and communicates using ASL (American Sign Language).

So many odds stack against Jacoby, a 5% chance to make it to a live birth, a 5% chance to survive if she did make it to a live birth, brain dead, never breathe on her own without mechanical assistance, never sit-up, never walk, never talk, never eat by mouth, but Jacoby’s fighting spirit has allowed her to overcome so much in her short life. We are very blessed and honored to have this incredible opportunity to share Jacoby's powerful journey of her ultimate fight to live, even with all the odds stacked against her.