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.


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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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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20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

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Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

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

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A Child's Life

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