Child’s Rare Disease Binds Family

by Christina Correa, Intern, Old Dominion University

MMA jaceWhen 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.       

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Fighting the Beast

 dianne dancing with son in law reduced

 When she first heard that her youngest daughter was planning a wedding in March, Dianne hoped she would be medically cleared to make the long trip to Australia to share in the celebration. While Dianne has been living in Houston, her husband’s home town, seeking cancer treatment, her husband and children have remained in Australia.

For the last six years Dianne has been battling high-grade serous carcinoma at MD Anderson in Houston. She’s relied on her upbeat attitude and deep faith as well as the skill of her U.S. doctors to sustain the fight. Besides surgery, Dianne has endured 35 rounds of chemo to attack what she calls “the Beast” that invaded the lining of her abdomen. Dealt a double blow, she has also been diagnosed with melanoma and has had problems recovering from surgery due to effects of chemo. In late 2011 she was referred to Sloan Kettering in New York to explore further treatment options.

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