Child’s Rare Disease Binds Family
When Suzanne was pregnant with her second son, Jace, the ultrasound showed that he was perfectly healthy. Shortly after his birth, however, Suzanne and her husband, Danny, discovered that Jace had a very rare condition that affects only one in 400,000 children.
Jace, who turned two on December 12, suffers from cloacal exstrophy, also known as OEIS. The abbreviation comes from four common symptoms of the disease: an omphalocele, or protrusion of the intestines near the umbilical cord, exstrophy of the bladder, an imperforate anus, and spinal defects.
Since birth, Jace has had various complications and surgeries and still has many surgeries to come, but the family remains positive and encouraged through it all.
“Through everything, this has been the sweetest time of our lives,” said Suzanne.
Although doctors had believed that Jace would never be able to run or even walk, the little boy is doing both. Despite having OEIS, he is still able to enjoy many of the things that children do, including running, playing, and even wrestling with his three-year-old brother, Ian
“He does everything with a little bit more spunk,” said Suzanne of Jace.
Mercy Medical Angels will be flying the family of four from their home in Fresno, California to Johns Hopkins Hospital in Baltimore. Jace will have two surgeries for his bladder and other internal issues. It will be a two- to three-month recovery process. During that time the family will remain in Baltimore together.
“It has been an amazing journey, and we can’t wait to see what God has in store,” said Suzanne.
She and Danny believe that someday Jace’s life will be used to inspire and encourage others. His illness has already brought them closer together as a family and has strengthened their faith in God. They wish to spread a message of hope to any family who has a loved one suffering from OEIS— that there are answers available.
“To parents and anyone who may have a child or someone they know who has this: keep fighting for answers. It is so important to get to where you need to be with your child.”