On the last Sunday in October, Jeff complained of severe pain that ended up being a cecal volvulus, which is very rare. It is a serious medical issue involving the intestines where the cecum, the first portion of the large intestine, loops around itself and creates an obstruction. Ater 2 hours in the ocal emergency room trying to find a service to take him to Lancaster General, we had to drive him urselves (about a 2 hour drive) We were praying the whole time that we didn’t lose him before he could have life-saving surgery. The surgeon here and in Lancaster both agreed that Jeff had hours not days to get the operation. While we were driving him, I knew he was still alive because he was snoring. He had part of his ileum removed, plus the appendix and gallstones taken out and he battled pneumonia while in the hospital and at home. He now has a large scar up his belly. He has healed very nicely and s back to normal - working and volunteering. We are so thankful to Dr. Morton, Dr. Strauss, and Donna rom the Clinic for Special Children for their amazing medical work as well as the very dedicated nurses on the Pediatric floor at Lancaster General. It was funny to have Jeff, who turns 40 on Feb. 17 to be on that floor. He tried to take some of the nurses home. I know we tried our best but we just weren’t as pretty or as nice as the ones on the floor.

Galen Carrington Classic MSUD age 27

Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital

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My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

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Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

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MSUD Awareness Day

Now more than ever before we are hearing about National Awareness Days which are set by organizations or the government to bring attention to issues of importance.

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In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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A Child's Life

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