Featured Stories

Vinnie is doing well. After suffering his first transplant rejection January of 2015 and taking most of the year to recover from it, so far 2016 is proving to be a healthier, happier year! This year we will celebrate his 5 year transplant anniversary of receiving a small bowel! He is doing great in kindergarten, [...]

This past year has been great for Kyrie! The best yet. In June, Kyrie started feeding therapy and a blended bolus diet, both of which has been a great success. Kyrie now eats (tiny bits) by mouth and is handling more feed than ever! Kyrie is still on TPN 10hours a day. He was on [...]

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Story coming soon!

Andrews update is that he is now 15 years old.  G-tube feedings are 12 hours a day.  He attends high school and is in the drum line in band. He became much more social after discontinuing feeds during school hours, & upon starting high school. Previously, enteral feeds were run 24 hours a day.  Suddenly, [...]

We have some new warriors following so I wanted to update and introduce kayden. Kayden is an x 34 weeker weighing in at 4 lbs with his intestines on the outside of his body. Kayden was immediately taking to his first surgery at 3 minutes old, and we got the hardest question ever asked of us. [...]

The Voss Award (Two Tickets to the Lincoln Stars Hockey Team and Parking Pass) Hi! I am Andrew Voss.  I am a happy, and active 11 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 [...]

  Austin was born with less than 10% of his intestine functioning. As a result, he has Short Gut Syndrome. He is dependent on TPN for nutrition and hydration. This requires that he's is hooked up to an IV at least 17 hours a day. There are many serious medical complications associated with Short Gut [...]

Our brother Tony is 7 years old and 2 1/2 years later he has been waiting for transplant. Tony is need of a stomach & total intestinal transplant and the longer his wait he will also receive liver transplant. He was born with Total Colonic Hirschsprung's Disease. It affects his digestive tract that doesn't allow him to eat or go [...]

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 [...]

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 [...]

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 [...]

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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 [...]