Experts by Experience
I am 26 years old and have lived with short bowel syndrome, a rare intestinal disorder, and my entire life. When it comes to this disease, I’m’ an expert by experience. Short Bowel Syndrome is a rare disorder that affects about 15,000 to 30,000 people in the US. SBS is the result of a congenital defect (NEC, gastroschisis, and volvulus, to name a few) or trauma. Crohn's disease is also a [...]
Andrew’s Story
Andrew Voss: Age 10 Hi, I am Andrew Voss. As I write this, I am a happy, and a somewhat active 10 year-old boy with short bowel syndrome. Here’s how it all started… In 2001, I was born with volvulus, or twisted intestines as my doctor explained. Due to the lack of blood flow to my intestines, doctors removed 2/3 of my small bowel during a resection surgery, at [...]
Albert’s Story
Albert Rigau: Barcelona, Spain Albert was born the 12th March 2009. Before that day I had been resting in bed because the bag was broken. He was born apparently healthy but six days later they diagnosed him with Enterocolitis and after spending two days with an abdominal zipper they decided to go for surgery. The result: almost all his intestine lost. He was left with his duodenum, 7.5cm of jejunum [...]
Telethon helps miracle baby
This was an article written by Mizzou Weekly in 1987. At the time my family still lived in Columbia, Missouri due to my short bowel syndrome care. I was chosen as the promotional child of the year for the telethon. Telethon helps miracle baby May 15, 1986: Columbia, Missouri-Mizzou Weekly Mizzou staff member Leo Jablonski and his wife Barb, never paid much attention to the University Hospital and Clinics Children's [...]
Lyla Ann
When I was 18 weeks pregnant we found out our soon to be born baby girl had Gastroschisis. Gastroschisis is a birth defect where a hole is in the abdominal wall and the intestines are on the outside of the body. During my doctor visits twice a week, we saw that her intestines were getting more and more swollen from the amniotic fluid irritating them. They decided to take her out [...]
Charleigh’s Story
Story coming soon!
Ellie’s Story
Featured Child of the Month: Ellie Borgan Ellie lives in the Boston area with her mother and father, Abby and Gib Borgan. Ellie was born in 2006, missing 90% of her small bowel and 30% of her colon due to Jejunal Atrisia. Ellie is diagnosed as having Short Bowel Syndrome. Ellie has had multiple surgeries since birth and is on tube feeds and Home Parenteral Nutrition (HPEN). Abby and her [...]