Anna, the mother of a little Russian girl with MSUD, with whom I had been in contact (see article by Anna, MSUD in Russia, in this issue), sent me an urgent request for help on March 31, 2002. She was deeply concerned about a one month old baby boy in St. Petersburg, Russia who had just been diagnosed with MSUD. Egor’s parents felt unable to take on the responsibility of a child who would require a lot of intensive and expensive care, and they were giving him up. The doctors were not well acquainted with MSUD, and Egor’s future looked bleak.

My heart was touched with the plight of this child. I wrote about the need for a home for Egor in the Vol. 21 No. 2 issue of the MSUD Newsletter and put a notice on the MSUD Family Support Group website. Irene Yusim, a friend of Anna’s in the United States, spent many hours communicating with adoption agencies and potential families. Several families showed interest in adopting Egor but eventually gave up. Families adopting from Russia are not allowed to meet the children until all the paperwork is done. This, along with the high cost of international adoption, Egor’s delayed development, and the need to learn how to care for a child with MSUD, discouraged families from adopting him.

After spending 6 months in a hospital, Egor lived in one of the best orphanages in Russia until the age of four. He was then transferred to a specialized facility for handicapped children. A Russian family in Finland, through a Christian charitable organization, purchased formula for Egor and delivered it to the orphanage.

Although Anna lived a long distance from Egor, she was very instrumental in his care. She supplied some of her own formula immediately after his diagnosis and sent the first supplements of isoleucine and valine. Throughout Egor’s life, Anna stayed in contact with his doctors providing them with information she had learned from her own research and from contacts with doctors and dietitians in other countries. These doctors highly respected her opinion. She eventually took a long train ride to visit Egor and took pictures of him to show potential adoptive families.

Egor passed away near the end of last year (2006). It is so sad that no family could be found to adopt him. As Anna wrote to me, "All the qualified care Egor received cannot substitute for the personal attention any child needs. In Russia, handicapped children do not get adopted. A lot of healthy children live in orphanages. Egor’s only chance was to find someone through the MSUD group." We failed to find a home for him, but his life was not in vain. Russian doctors in St. Petersburg now have more knowledge of MSUD which may benefit others in the future. May God bless Anna and Irene for all they are doing for the cause of MSUD in Russia.

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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Sweet Odyssey

Artur Santos was born on January 18, 2002, the second son of Soraya and Idario Santos. They never imagined how their lives were about change as the second baby arrived.

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As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

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In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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Our Story

On April 23 2015, our precious firstborn son Eliyahu Tuvia was born in Jacksonville, FL. All seemed well and we took our bundle of joy home.

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A Child's Life

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