Oliver Patterson, 12 years old, holds a trophy he earned as being first in his class chosen this semester as Student of the Week, for “determination to progress in all areas”! Oliver, a Variant MSUD, attends school in Qatar while living there with his family.
How do you travel across the world to a vastly different country with a child that has MSUD? With VERY careful planning and the help of many people. It was a big decision to move to Qatar as we did 2 years ago. It was a lifestyle decision. We wanted to show our then 9 1/2 year old twins Oliver (Variant MSUD), and Eric that there is a big world out there, and from small town Canada, this was not always easy.

The planning was a nightmare, and without the good people from The Calgary Children’s Hospital, the move would not have been possible at all. Our dietitian sat down with me and gave me a crash course in calculating formula. Oliver takes his formula via a G-tube, and the little crate that we shipped was full of his supplies: 3 pumps, 100 feeding bags for the pump, syringes, a year’s worth of low protein flour, formula and the usual paraphernalia. I also contacted a physician in Saudi Arabia before the move to make sure that sufficient expertise is available in this part of the world should Oliver get sick.

Living and traveling here is interesting, and we have also traveled extensively since our move. As a family, we have visited Sri Lanka, Kenya, Tanzania, India (that trip gave me some concern) and Egypt. Two summers were spent traveling 7 weeks each through Germany and Austrian and one week in Paris. No problems so far (other than I got REALLY, REALLY sick in India. Oliver was fine!). Everywhere we go, there are french fries or some sort of other potatoes and rice. I pre-bake the bread and brownies and take then from hotel freezer to hotel freezer. The hotel and kitchen staff has been always exceptionally accommodating. In Tanzania, the young waiter and the dining room supervisor were absolutely aghast at the sight of the g-tube and his dietary limitations and took it upon themselves to come up with the best alternatives to what we were eating. They really rose to this challenge.

Oliver’s level of control has been good. We do not get very many blood tests done as they come 4 weeks late or not at all, so I have to judge a lot by his actions. I am very careful with his diet. Another difference is the expense. In Canada, the Government paid the aid for Oliver. Here, we foot the bill.

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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.

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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.

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Cambrooke Therapeutics

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Emory Metabolic Camp 2018 Announcement

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

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From The Chairman’s Desk

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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.

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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

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19th Biennial MSUD Symposium

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A Child's Life

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