Trever Miller and his wife are coping well with their youngest child born with a rare chromosomal disorder.  Grace, born on June 2004, has a translocation of her 21st chromosome and has a duplicate 16th chromosome.  Those genetic defects have led to Grace’s heart being troubled with an atrial septal defect and Parent Ductus Arteriosus.  [317][318]

Defect Without a Name

Grace Miller’s case is reportedly just the 21st of its kind in recorded medical history.  Her doctors only gave a harsh outlook and expected for her to live only a year with a disorder that doesn’t have a name.  Unfortunately, none of the previous 20 cases had lived longer than one year.  [317][319] I wonder how many of those past cases involved parents of the patients with ample resources to receive first-rate care that the newborns needed.  Please excuse me if you find the previous statement insensitive.  

Apparently, the latest case involving this particular disorder happened in 1986.  [320] Advancement of medicine obviously in general has helped patients with different kinds of disorders to survive.  

Surgeries for Grace

Grace Miller was born with two holes in her heart.  Her first year was filled with difficulties.  When Grace was four-months-old, her cardiologists performed an obligatory open-heart surgery at All Children’s Hospital.  Prior to that, she developed symptoms of heart failure when she was at home.  She didn’t get to go home until two months later.  When she finally came home, she still needed constant care.  Nevertheless, she continued to be operated on so she would have a chance to live longer than anyone else with her set of conditions. Trever has also mentioned that many doctors are apprehensive to even do the surgery that helped Grace live longer.  James Quintessenza, MD was the cardiologist who took the chance and operated on her.  [317][318][319]

Trever Miller felt the “Greatest Physician” took care of Grace in May 2010 as she was in surgery to take out a kidney stone that was persistent for four years.  When something went awry during the procedure, she suffered a detached ureter.  She went home after a follow-up surgery showed that her kidney stone was gone.  [319]

Amazing Grace

Grace Miller is unable to talk or walk, rarely cries, and breathing for her can be troublesome because she occasionally gets mucus stuck in her airways.  A ventilator is used to assist her breathing.  When Trever and Pari Miller go out with Grace, they bring a suction machine, two 15-pound oxygen tanks, and a machine that monitors her blood-oxygen level.  Also, Grace is attempting to learn sign language.  [317][318]

She even has fought off deadly infections.  Her chronic lung infections make her susceptible to pneumonia.  [318][319]

Pari is Grace's Savior

Twice, Grace Miller had to be saved by her mom.  The first incident happened two days before Mother’s Day in 2005.  Pari was able to revive Grace after she stopped breathing, her pulse vanished, and turned purple.  Trever paid homage to Pari by calling her “maternal perfection” on the Tampa Bay Rays’ website.  [319]

The second incident Grace had to be rescued by Pari happened at Tropicana Field just minutes after the Tampa Bay Rays won the 2008 American League Championship Series.  Pari was able to save her as Trever and his teammates were on the baseball field celebrating the last out.  [317]

In Good Hands

I made an initial comment that Trever and Pari have the resources to take care of Grace. Trever is a major league baseball player since 1996.  His current employer, the St. Louis Cardinals, is aware of Grace’s congenital defect.  I’m sure the owners have deep pockets to help out her (or any other kid) if it becomes necessary.  Nevertheless, my opinion shouldn’t be taken seriously since Trever and Pari made the decision to battle against the genetic disorder .  Both of them have the heart to not give up on their daughter and take good care of her.  Lastly, their two other kids, Tyler and McKenzie, has been very gracious to the situation.

Abstract of a Chromosome - Looks Like a Ladder for Climbers to go Upwards

Credit: Chrisharvey at Dreamstime