Joshua's still our "Little Trooper," taking one day at a time. Today he's off all enteral and IV nutrition completely! Our world as we knew it changed completely when his surgeon closed his g-button site in 2014. At nearly ten, he is still receiving nightly growth hormone injections and takes lots of supplements daily. Proper [...]
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 [...]
Story coming soon!
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, [...]
Check out the New York Times article on Andy Jablonski, his disease, and his great cause here: http://www.nytimes.com/2013/01/31/business/orphan-drugs-for-rare-diseases-gain-popularity-with-pharmaceutical-companies.html?_r=0
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 [...]
My name is Cody Wilson. I was born in Seattle, Washington on May 27, 1992. Life for me was hard from the beginning. Being born 9 weeks early saved my life. The doctor found I had developed Necrotising Enterocolitis and before I knew it, I was in surgery. They removed approximately 2 feet of my [...]
Owen has had three surgeries: jejunal resection for an atresia on day 2 of life, another resection with jejunostomy/fistula placement on 10/05/12 for a total bowel volvulus and ostomy takedown and further resection on 01/08/13. After his three surgeries, he was left with 30 cm of small bowel. He is currently on TPN for 16 [...]
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 [...]
Joel Vickoren was born with SBS with an underlining syndrome called Digeorge syndrome. Joel spent three months in the NICU after he was born, and ended up losing all but 10 cm of his small bowel due to a midgut volvulus and jejunal atresia. The Vickoren family has endured hardships they never thought were possible, [...]
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 [...]
Joshua Southern was born April 28, 2006 with gastroschisis. Gastroschisis is a birth defect in which part of the intestines have "ruptured" through the abdomen wall. Within hours of birth the majority of Joshua's small bowel had died and was removed. Multiple surgeries and setbacks awaited us the first part of his critical life. It [...]
Living with short bowel syndrome has been quite a journey over the past eighteen years for both my family and I. When I was born I was immediately taken into surgery to remove a large portion of my small intestine: a lifesaving operation. Since, I have been extremely blessed by a healthy and thriving life. [...]
Alana was born on April 22, 2011 with several medical obstacles to overcome, in addition to her Short Bowel Syndrome, caused by Necrotizing Enterocolitis (NEC). Alana lived with a central line until January 2012, but still receives regular GI feedings through a G-Tube. Alana’s family went through a very emotional and financially draining experience, juggling [...]
Twenty-Three years ago Swapna Kakani and her parents did not know her fate as a newly diagnosed newborn with Short Bowel Syndrome. Today, after 40 surgical procedures later, and waiting on a list for an intestinal transplant, they still don’t know what the future holds. Though Swapna has always had a positive outlook on life, [...]
