TEN ROMEO NEWSLETTER
Report 54
January 15, 1993
Dear Friends:
This report will not be sent until after the holiday rush, so I will wish everyone a belated MERRY CHRISTMAS and HAPPY NEW YEAR!
Much has happened since my last report. I often face the same difficult options upon returning from a trip: do I take time to pull together a report, or press ahead with the many details resulting from the travel that has just been completed? Each trip seems to result in new requests for assistance. In time both action memos and the report will get done. Thanks for your patience in the interim.
Meeting little five-year-old Sergey Zezulin a year ago was a delightful experience. He was a "handicapped child" in a society which, due to lack of commitment and/or money, relegates such children to the "human dump heap" with no future. As I became better acquainted with Sergey, I became increasingly certain that his doctor's diagnosis of "never being able to develop mentally beyond three years of age" was in error. This report will detail Sergey's return to "normal" status as a result of a complete US medical and developmental testing program.
BACKGROUND
Sergey is the engaging youngster whom I met a year ago on the train from Moscow to Tallinn. After five major brain operations in five years, doctors had told his parents that he would never be more than three years of age mentally.
You met little Sergey and his family in Report No. 52 dated April 15th.
In subsequent trips to Tallinn in early 1992, I became well acquainted with the Zezulins. Two events stand out as significant. Family photo albums were shared, and in one there was a photograph of Sergey's parents taken by a street vendor in Moscow during one of Sergey's operations. The outcome of the operation was not known at the time the photograph was taken, and the worry, the despair, and the pain of possibly losing a beautiful child were graphically captured by the photographer - a remarkable portrayal of human grief and suffering which powerfully impacted my sensibilities.
Some time later, while at the Zezulin home, I told father Boris how lucky he was to have such a wonderful family. He smiled and responded with pain and sadness. "No, Mil, I am not fortunate ---- I have an invalid son!"
A CONCEPT EVOLVES
I saw little Sergey as a normal, responsive five year old. He rode a small bicycle with ease. His interaction with the family seemed normal, even with my limited skill in his language. His play habits appeared normal. It was hard to mesh the official prognosis of Sergey's condition with what I observed.
I brought a complete set of Sergey's medical records home with me in May. Copies went to Dr. Martin Murphy, CEO of the HIPPLE CANCER RESEARCH CENTER, and the three MDs in my family, son Kirk and his wife Chris, and son-in-law Chuck, who shared them with oncology colleagues. Careful review by this stateside medical consultative team studying Sergey's records offered no more than a "guarded" hope for the lad's future. There was little to support my "not retarded" view.
A true measure of Sergey's condition could only be gained through a more comprehensive medical and developmental testing program than was available in Tallinn or Moscow.
The pressing need for Sergey's review may not be obvious. In the former USSR there is no money for special education programs for disadvantaged or handicapped children. Once identified as an "invalid", a child cannot attend school.
Sergey would need a complete US review for any chance of a change in his "invalid" status.
THE MIRACLE TAKES SHAPE
Once the parents agreed that Sergey could come to America for a medical review, the complicated mechanics were reviewed. Obviously, Sergey's mother, Lidia, would accompany him. However, Lidia's skill in English is limited, which required an interpreter to travel with them. A friend in Tallinn who speaks English fluently is Ludmila Bobkina, the Air Traffic Control interpreter I first made contact with when flying TEN ROMEO into the Tallinn airport.
My friendship with Ludmila has grown since that flight. She arranged for me to serve as mediator for the Soviet controllers when they were determined to strike two years ago.
Ludmila would be available if AVIES AIR COMPANY would provide released time and her mother could come from Tajikistan to care for her son.
On my next trip to Tallinn I stopped in Helsinki to arrange for the three flight tickets from Tallinn to JFK and return. In Tallinn US visa applications were prepared for the travelers. At the US Embassy I was told that my Estonian friends would probably be unable to obtain their exit passports in less than six months. My plans called for them to be in the States within three months.
I had expected to allow the visa matter to proceed normally, but with this alert, I went directly to President Ruutel's office, indicated what I planned to do, and asked for help in obtaining the Estonian paperwork needed for the trip to America.
Raul said, "We've issued only a dozen or so exit passports to regular citizens, and we are 'up to our eyeballs' attempting to cover our Olympic Team. However, I can arrange what you need. It will take me a while to make arrangements - call me in two hours, Mil".
In two hours I called, received instructions which I passed on to Lidia, and the following day at noon the two Zezulin exit passports were issued. Ludmila already had hers, since AVIES responsibilities often take her to Sweden.
With much accomplished on that July trip, I returned home to continue my search for testing support.
A FINAL CHECK
I returned to Tallinn in September to be certain that everything was in place.
AVIES would provide released time for Ludmila, and her mother had arranged to be in Tallinn with her son, also named Sergey, who was seven.
All details seemed to be in order, and I planned a luncheon with Lidia and Ludmila at the Hotel Olympia to go over final arrangements for their NYC arrival and my pickup at JFK to drive them to Delmar.
As we settled at the table, Lidia said, "An interesting thing happened as I prepared to come to lunch!"
(Sergey's father, Boris, has a handsome mustache, and Sergey's "girl friend" is named Sucha.)
Lidia told us about being in the bathroom showering when Sergey came in, took a long look at her and asked, "Mommy, when Sucha is your age, will she have a mustache right there?" as he pointed to her midsection.
We had a good laugh, but as I thought about that episode, it seemed to me this was the best evidence to date that Sergey's thought processes were closer to his chronological age of six rather than three.
OUR ESTONIAN GUESTS ARRIVE
The two weeks our guests were with us were filled with excitement, new experiences, testing, and relaxation.
SLOAN-KETTERING MEDICAL CENTER in NYC would have been an excellent place for Sergey's review, but the housing problems would have been difficult. Testing at the ALBANY MEDICAL CENTER would allow much easier handling of ancillary needs than in NYC, and we were fortunate in finding our way to one of the leading pediatric oncologists on the Eastern seaboard, Jennifer N. Pearce, M.D. who is on the staff at AMC. We were just as fortunate in locating Melinda Tanzman, Ph.D. for Sergey's developmental testing. Dr. Tanzman is Clinic Director of the CHILD RESEARCH AND STUDY CENTER of the State University of New York at Albany. These two women are filled with unbounded compassion, and their work with Sergey was a commitment of love and humanitarianism.
THE MIRACLE IS VERIFIED
Dr. Tanzman found Sergey to be "intellectually average with apparent good language skills." At six he scored an age equivalent of eight on the "Peabody Picture Vocabulary Test Revised". His slight motor difficulty "does not seem to seriously interfere with his performance."
Dr. Pearce scheduled Sergey through extensive medical tests. The MRI scans revealed no remaining cancer.
John Carl D'Annibale's TIMES UNION photo on Page 1, Section B, 10/26/92.
John, a new "koresh" (buddy) and Sergey's photography "mentor".
Professor Tanzman patiently led Sergey through many tests and games.
Dr. Pearce receives a small gift from Tallinn presented by Sergey.
Dr. Simon's special ophthalmology equipment was fascinating to Sergey.
Sergey came back a second day for testing with the audio team.
Ludmila's baptism at the FIRST UNITED METHODIST CHURCH of Delmar, New York.
Block Island, a wonderful place for "REST & RECREATION".
His eyesight is normal, and while he has loss of hearing in the left ear, Sergey has learned to compensate for that loss. Dr. Pearce says in her report to Dr. Adams, Sergey's referring doctor in Tallinn, "I would be very optimistic about Sergey's future and would begin to change the perceptions of the family and the medical community to that of a normal child."
MEMORIES
Those were delightful days with our guests from Estonia. I remember "roughhousing" on the floor with Sergey - no more or less than normal activity with my grandchildren under the critical eye of mother Lidia who suggested, "we treat Sergey more gently than that, Mil!" After the medical review her restraints were somewhat lifted.
We flew to Block Island for two days of "R and R", and my summer "dacha" or "Shangri-La", became a favorite of our guests. Sergey found copiloting TEN ROMEO much to his liking.
Later we parked the car in town and Lidia and I went grocery shopping. After we left, Sergey - restrained by the seat belt - turned to Ludmila in the rear seat and said, "I'm tired of being tied up like a dog! Let's get out of here and go for a walk!"
On Sunday, October 18th, Ludmila was baptized during the morning service at the FIRST UNITED METHODIST CHURCH in Delmar. Ruth and I were witnesses. One Sunday weeks later my friend, Maurice, took me aside and said, "Mil, for you to bring Ludmila out of the former USSR and have her baptized in our church was the most moving experience I've had in many years!"
One noon we went to the "Four Corners Luncheonette" to eat. A cameraman and a reporter from the TIMES UNION, our daily newspaper, were there on business. Sergey was fascinated by the camera equipment, and soon was taking pictures under cameraman John's direction. Before that encounter was complete, Sergey became the focus of that press team, and a wonderful story appeared three days later.
And so it went with hundreds of little memorable episodes - all of which are meshed with a warm feeling of "koinonia" and grateful appreciation for not only Sergey's miracle, but lasting memories.
All too soon our guests had to leave.
EPILOGUE
In November I hand carried Sergey's records to Tallinn for delivery to Dr. Adams and Commissioner of Health Kork. The ten MRI films, extensive US medical documentation, and in-depth developmental test results were the talk of Tallinn's medical community. Sergey is now a link bonding AMC and SUNY at Albany with Tallinn for whatever the future may hold.
We gave Sergey the chance to lead a normal life, and Lidia now indicates he is doing well in kindergarten!
* * * *
My thoughts go back to Moscow in late 1987. My friend, Rev. John, agonized with me over a woman dying of cancer. SLOAN-KETTERING had a bed awaiting her in NYC, but Soviet officials refused an exit clearance. "Give me her name, John! I'll get the clearance!"
My COMMEMORATIVE flight had received worldwide media coverage. I was a hero in Moscow with name and street recognition, and had recently spent two days with the Central Committee negotiating for Mathias Rust's release. I could have obtained her clearance, but John was unable to gain US approval for my help.
Fame is fleeting, and valuable only to the extent that it can implement the accomplishment of good deeds. That 1987 failure left a small, hidden hurt deep in my soul.
Sergey's miracle eased that hurt.
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Harmon Associates
34 Elsmere Avenue
Delmar, New York 12054
(518) 439-7166 FAX (518) 475-0434
November 30, 1992
President David Cornell
ALBANY MEDICAL
CENTER HOSPITAL
43 New Scotland Road
Albany, NY 12208
Dear David:
I want to bring to your attention the outstanding job that was recently done by Jennifer Pearce, MD on your pediatric oncology staff.
Last month we brought six-year-old Sergey Zezulin, his mother and an interpreter to Albany from Tallinn, Estonia, for a complete US medical and developmental review. You met Sergey in the April 15th TEN ROMEO NEWSLETTER. Because of Sergey's five major brain operations, he was identified as "handicapped", and his parents were told he would never develop mentally beyond three years of age. I believed this was a misdiagnosis.
Professor Pearce did a remarkable job in "networking" with her professional colleagues to see that Sergey's medical review was complete. This included not only her evaluation, but MRI attention, Dr. Simon for an ophthalmology review, and Director Cacace for an audio logical check. Physical Therapist Denise Serotta examined Sergey and provided exercises to help him overcome a slight weakness of his left side.
I've just returned from hand delivering Sergey's records and the ten MRI scans to Dr. Toomas Adams, Sergey's referring physician at the TALLINN EMERGENCY HOSPITAL. Rest assured, the Tallinn medical community became quickly informed of the professional expertise which was focused to bring about Sergey's review.
The United States has a bright image in Eastern Europe as well as in the former USSR. This deserved reputation is in large measure a function of the generosity of humanitarian staff, such as yours, who help those from parts of the world less medically sophisticated. In the former USSR there is no funding for "handicapped" children, and those so designated are put aside and forgotten. Those professionals who provided Sergey's review gave him the opportunity for "normal" life. He will now be "mainstreamed" educationally.
I'm continually impressed, through media coverage, by your many humanitarian efforts as a part of your modus operandi. This note is another "THANK YOU" for the wonderful things you and your fantastic staff handle routinely.
CordiaIly,
Millard Harmon
cc: Jennifer Pearce, MD, ALBANY MEDICAL CENTER
Kieran Murphy, MD, ALBANY
MEDICAL CENTER
William A. Wagle, MD, ALBANY
MEDICAL CENTER
John W. Simon, MD,
ALBANY MEDICAL CENTER
Anthony T. Capace, PhD, ALBANY MEDICAL CENTER
Physical Therapist Denise Serotta, ALBANY MEDICAL CENTER
President Martin J.
Murphy, Jr., MD, HIPPLE CANCER RESEARCH CENTER
Dr. Toomas Adams, TALLINN
EMERGENCY HOSPITAL, Tallinn, Estonia
The Honorable Robert C. Frasure, US
Ambassador to Estonia
Others as Appropriate
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Harmon Associates
34 Elsmere Avenue
Delmar, New York 12054
(518) 439-7166 FAX (518) 475-0434
November 24, 1992
President H. Patrick Swygert
UNIVERSITY AT ALBANY - Room AD 246
1400 Washington Avenue
Albany, NY 12222
Dear President Swygert:
Clinic Director Melinda Tanzman, PhD of your CHILD RESEARCH AND STUDY CENTER is a woman of professional compassion.
We recently brought Sergey, a six year old from Tallinn, Estonia, his mother, and an interpreter to Albany for an American evaluation of his medical and developmental status. Medical perception in Moscow and Tallinn indicated Sergey would never develop beyond three years of age because of his five major brain operations. Since there is no money for work with the "handicapped" in the former USSR, he was set aside to be forgotten.
Friends in the Albany City School District suggested that I approach Dr. Tanzman for the developmental testing required to understand Sergey's status. I know how tight funds are in the current SUNY budget, but Dr. Tanzman and her staff tested Sergey on a humanitarian basis.
As a taxpayer, a concerned former academician, and an administrator with more than 20 years of service with SUNY, I am delighted with the testing provided little Sergey. The United States has a reputation of generosity around the world. Thousands of individual acts of humanitarian concern, such as Dr. Tanzman performed, keep that image bright and visible.
We have sent Sergey home with a new lease on life as a documented "normal" child, thanks to the evaluation by Dr. Tanzman's clinic.
Friends have been tracking our efforts to help Sergey, and they will be delighted with our success. SUNY at Albany has a central part in our joy of giving Sergey an opportunity to live a, normal life. Tallinn is "abuzz" with the American effort which gave the young lad his life back!
We hope to provide a modern CT SCANNER for the children of Tallinn soon!
Respectfully,
Millard Harmon
Enclosure: TIMES UNION article of 10/26/92
cc: Clinic Director, Melinda Tanzman
, PhD, SUNY at ALBANY, Albany, NY
Dr. Toomas Adams, TALLINN. EMERGENCY
HOSPITAL, Tallinn, Estonia
President Martin J. Murphy, Jr., MD, HIPPLE CANCER
RESEARCH CENTER
Norma Woolner, MD, MEMORIAL SLOAN-KETTERING CANCER CENTER,
NYC, NY
Kirk Harmon, MD, WASHINGTON CLINIC, Tacoma, WA
Charles Phillips, MD,
BIRMINGHAM MEDICAL CENTER, Birmingham, AL
Superintendent John Bach, ALBANY CITY
SCHOOL DISTRICT, Albany, NY
President Elizabeth Dole, AMERICAN RED CROSS,
Washington, DC
President George Fisher, MOTOROLA, Schaumburg, IL
Chairman Cyrus
S. Eaton, Jr., CYRUS EATON WORLD TRADE LTD., Cleveland, OH
Chairman John F.
Welch, Jr., GENERAL ELECTRIC, Fairfield, CT
The Honorable Robert C. Frasure, US
Ambassador to Estonia
Others as Appropriate
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