Search

Our son Connor Patrick McMahon was born on St. Patrick’s Day in 1996. My wife and I are both Irish, so it was a dream come true for both of us. On Connor’s fourth or fifth day of life he stopped drinking. His eyes closed and remained closed for several days. Through the Newborn Screening test we were made aware that Connor had Classic MSUD. Like most of you reading this, we were devastated when we heard the news.

Connor’s first few years of life were spent with frequent hospitalizations due to elevated leucine levels, mostly caused from illness. From ages one to five Connor experienced a few ICU visits. Although to have him in ICU is a big scare, it is the best place to have him when he is ill. Thankfully, he was able to overcome each episode he was dealt.

I feel like I have to make you aware of some of the darker moments we have had to deal with, in order to fully appreciate the brighter ones. There are so many bright moments in Connor’s life that we feel like we are bragging about him, but here are some anyway.

Connor is a bright, athletic child with a wonderful sense of humor. He is a straight A student and accelerates in math. In our Spring teacher conference this past June, we were told that Connor is the class leader and that he is such a role model to the other children. Connor has always been discrete about his disease. I think some of his classmates might not even know he has it. It is just something that he deals with and he feels no different. Connor plays hockey, baseball & football on various organized teams. He excels in all these sports and enjoys them very much. Connor’s disease has not affected his ability to excel in athletics. Connor is a very popular child with several different groups of friends. He is very social and very active.

Connor is able to tolerate 1,200 mg/leucine daily. His daily diet consists of mainly cereal, low pro bread, pasta, fruits & some vegetables, snacks of all sorts & potatoes, potatoes, potatoes!!

Connor is tall & thin. He is now ten years old, 5’ tall and weighs 76lbs. Connor has had some difficult times dealing with his disease, but for the most part he is acceptant and understanding of what he is faced with.

I’m sure there may be some difficult times ahead, but with the diligent work from his mother and the strength of Connor we will get through them. God has blessed Connor with so many wonderful qualities that it has made it a bit easier to overcome things.

While many people may look to athletic superstars, business executives, priests, and doctors for their inspiration, our son Connor is our true inspiration. The way he deals with his everyday diet, the way he may not always feel his best but continues to carry on and live a normal and wonderful life. Thank you Connor for inspiring me, your mother, your sister and hopefully many others who deal with what you have to deal with.

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

Read More

NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

Read More

Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

Read More

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.

Read More

Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

Read More

From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

Read More

MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

Read More

The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

Read More

19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates