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Real LifeChild's Rare Disease Brings Family Together
When Suzanne was expecting her second son, the ultrasound showed he was perfectly healthy. But shortly after his birth, Suzanne and her husband, Danny, discovered that Jace had a very rare condition affecting only one in 400,000 children.
Jace, who is two, hascloacal 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.
"Through everything, this has been the sweetest time of our lives," said Suzanne."
Though doctors had thought he'd never be able to run or even walk, the little boy is doing both. Despite having OEIS, he still enjoys many activities--running, playing, and even wrestling with his big brother, Ian.
"He does everything with a little bit more spunk," said Suzanne.
Angel Airline Samaritans 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-week recovery process.
"It's been an amazing journey. We can't wait to see what God has in store," said his mom.
"To parents and anyone who may have a child or someone they know who has this: keep fighting for answers. It's so important to get to where you need to be with your child."