The Regional Public Charity Foundation for
Seriously ill and Abandoned Children has been implementing the You Are Not Alone program since September 2005. The objective
of this program is to provide medical help to children with physical disabilities who need expensive high-tech treatment.
The program has special social significance, since it is aimed at helping many children who can become normal members
of the society after timely qualified treatment. So far it is the only program in Russia that is specially aimed at searching for gravely ill
children at orphanages and treating them.
Within the You Are Not Alone program we are going to
Create a database of orphans.
Organize visits of physicians and representatives of our Foundation to regional orphanages for examining the children.
Provide financing for train or flight tickets to children and persons accompanying them if necessary.
Hire nurses for orphan patients at the hospital and pay for their work.
Organize fundraising to pay for expensive kinds of treatment that are not included in the compulsory medical insurance
program in Russia.
.
Within this program, 120 orphans aged from six months
to 16 years received treatment at the Russian Children's Clinical Hospital in 2006 and in the first quarter of 2007.
They arrived from various regions: from Moscow to Far East, such as Chukotka and Primorski krai. The largest
numbers of such patients were admitted to the Departments of Maxillofacial Surgery, Urology, Neurosurgery,
and Psychoneurology. 40 children received expensive high-tech medical help.
Some patients needed additional diagnostic procedures (genetic or
microbiological testing etc.). The Foundation bought the medications and rehabilitation appliances that
were lacking at the hospital. Also, the children were supplied with the necessary food products, hygienic goods and
clothes. The total sum spent on these needs during the aforementioned period was 412,129.71 roubles (approx. $15,850).
Our Foundation bought equipment and consumables
worth a total of 680,247 roubles ($27,210) for orphans from the Department of Maxillofacial Surgery.
Children under eight and also children who needed special care during hospital treatment
were provided with nurses. The Foundation paid a total of 991,883 roubles ($39,675) for work
of 14 nurses, who took care of 23 patients.
Flight tickets worth 21,986 roubles ($880) were bought.
After treatment at the Russian Children's Clinical Hospital
and correction of disorders, 17 children were taken into new families (adopted or taken under foster care).
For further development of the program, we need a rehabilitation center for orphan patients somewhere
outside Moscow. It will enable us
To provide long multistage treatment at the Russian Children's Clinical Hospital to more orphans.
To simplify the process of this multistage treatment.
To make it more efficient and to improve the well-being of such children.
In 2007, our Foundation elaborated a program named "Dunno's friends" [Dunno, or Neznaika, is a character in a popular Russian children's book].
This program includes creation of such a rehabilitation center at a 18-km distance from Moscow, in environmentally clear surroundings.
If timely financing (a total of $300,000) is available, the program can be implemented very quickly.
Presently at least four orphan patients of our hospital should be placed in a rehabilitation center:
Sasha K., Milena L-na,
Ilya I., and Olya B-na.
President of Foundation Lina Z. Saltykova
May 5, 2007
Sasha K.,
a boy of 12, is from the Syzran town orphanage. The boy has a deep chemical
burn of the face affecting the osseous and cartilaginous tissues.
He needs several maxillofacial surgeries. The next one is planned for the autumn of 2007,
and periodic medical control prior to this surgery is desirable.
Milena L-na,
a girl of 5 from Yakutia, has a grave vascular disorder and needs constant medical care and control. Since the girl is already 5,
she may be transferred from her orphanage to an asylum for disabled persons, which will make her further treatment and recovery impossible.
Presently the girl lives at the House of Hope cottage, and a nurse provided by the Foundation takes care of her.
Ilya I.,
a boy of 11, is from Velikie Luki. He has Hodgkin's lymphoma.
He will receive standard chemotherapy for six months, and then qualified medical control for a year will be necessary.
Olya B-na
, a girl of 14 from the Moscow region, has a congenital craniofacial defect. A number of surgeries, including reconstruction of
skull bones, have been performed, and a special distraction appliance has been set on the girl's face for six months.
She cannot live in an orphanage with such a apparatus on her face.
Concept of program for providing medical help to children from orphanages
at the Russian Children's Clinical Hospital
According to official statistical data, there are about 230 thousand "social orphans" in Russia.
Among them, about 30 thousand have various disabilities due to congenital disorders, such as craniomaxillofacial abnormalities,
defects of the intestinal tract and urinary system, genetic diseases. Parents mostly leave such babies as early as
during the first few days, while they are still in maternity hospitals, and these children have almost no chance
of being adopted. Moreover: the general tendency in our society is to turn away from the necessity of their treatment
and rehabilitation, although these children, with few exceptions, have no mental or psychic abnormalities.
Sometimes even a diagnosis like enuresis is sufficient to direct the "inconvenient" child to a specialized
boarding school for retarded children.
At the same time, many of such children's problems can be successfully resolved by early medical
intervention and subsequent combined rehabilitation. If the treatment and rehabilitation are performed
at an early age, the disabilities can be eliminated in 70-75% cases. Such children avoid serious
psychological traumas, can be transferred to "normal" orphanages, have a better chance for return to
their family or for adoption. Also, the society now need not undertake special measures for solving their
social and financial problems.
The You Are Not Alone program is aimed at helping orphan children who have physical problems or
disabilities and need treatment at the RCCH. This program is of special social significance, because it is potentially addressed to
many thousands of children who can become normal and full members of our society as a result of timely and qualified treatment.
The program has been elaborated by the Regional Public Charity Foundation for Seriously ill
and Abandoned Children together with the Russian Children's Clinical Hospital.
At the first stage, more than 300 children are to receive help within this program.
President of Foundation Lina Z. Saltykova
Regional Public Charity Foundation for Seriously ill and Abandoned Children:
Phone numbers: (499) 130 64 42; (495) 936 91 66 (phone/fax)
E-mail: info@deti.msk.ru
Web site www.deti.msk.ru
To Heads of regional Public Health
and Education Ministries
of the Russian Federation
LETTER OF INFORMATION
The Russian Children's Clinical Hospital (RCCH), with its 1025 beds, is
the largest specialized pediatric institution in Russia. The hospital
includes 32 specialized departments working in virtually all directions
of pediatric medicine except for cardiology, heart surgery, and
neonatology (Appendix 1). Over 16 thousand children from all Russian
regions receive treatment at this hospital each year. While under
treatment, school-age children do not interrupt their education, because
there is a school working for them at the hospital.
Considering the presently growing number of children left without
parental care, the increase in the number of disabled children in
orphanages, and the insufficient volume of timely specialized medical
help to them (although this help is formally guaranteed by the state),
the RCCH together with the Regional Public Charity Foundation for
Seriously ill and Abandoned Children are planning to provide
the necessary specialized medical help to children from state-financed
child institutions (pre-school and school-age orphanages).
We ask the readers of this page to help us in implementation of this
program and (for readers living in Russia) to inform the directors of
pre-school and school-age orphanages in their regions about it.
For admission of children to the RCCH, they should be directed here
by a local medical institution or public health authorities and an
excerpt from the case history (with X-ray pictures and other materials
if necessary) with the necessary stamps should be sent to the RCCH with
the return address and the phone/fax number indicated on it.
Our address: Leninskii pr. 117,
Moscow, 117513 Russia
Phone/fax: +7(495)935-61-18
Head Physician of the RCCH
Prof. N.N. Vaganov
Appendix 1
• Specialists at the Center of
Microvascular Surgery have gained rich experience in treatment
of congenital and acquired vascular pathologies of various
localizations, deforming keloid scars, dysplasia of the auricle and
middle ear, craniofacial defects, etc. Original methods of cryolaser and
X-ray endovascular surgery have been developed.
• At the Department of Abdominal
Surgery, techniques for surgical treatment of hormone-producing
pancreatic tumors, obstructive and posttraumatic pancreatitis, and
biliary atresia have been developed and mastered. This is the first
medical institution in our country where plastic surgery of the
choledoch using the appendix has been used in treatment of choledoch
cysts and stenoses. Endoscopic methods have been implemented for
treatment of the gallstone disease in children. Treatment of giant
ventral hernias includes various plastic surgeries of the anterior
abdominal wall without the use of allografts.
• The only existing Department of
Pediatric Coloproctology in Russia deals with various congenital and
acquired pathologies of the large intestine and anorectal area.
Conservative and surgical methods for treatment of constipation and
encopresis, for surgical correction of combined proctological and
urogenital disorders have been developed.
•
Specialists of the Department of Traumatology and
Orthopedics have gained outstanding experience in treatment of
patients with congenital disorders of the musculoskeletal system.
Original methods for treatment of orthopedic patients have been
developed. The most advanced methods of osteosynthesis and various
apparata are widely used.
• The Department of Ophthalmology
and Eye Microsurgery provides almost all existing kinds of
surgical and therapeutic help to children with eye disorders.
Specialists of this department perform plastic surgeries for diseases of
lacrymal ducts using the endonasal approach, plastic surgeries of
eyelids with subsequent reflex therapy for ptosis, surgeries on eyes
with retinal detachment, etc.
• On the basis of the Thoracic
Department, original surgical procedures have been developed for
operations on the main bronchi and trachea, plastic surgeries for
cicatricial stenoses of the esophagus and throat. The techniques of
antireflux surgeries for achalasia and chalasia have been improved. The
Thoracic Department has gained rich experience in treatment of various
chest deformations.
• The Department of
Gynecology is one of the few hospital departments in Russia that
provide specialized help to children and adolescents with various
congenital and acquired pathologies of the genitals.
• At the Department of
Otolaryngology, specialists have developed methods for combined
treatment of juvenile angiofibromas of the skull base and for juvenile
respiratory papillomatosis; elaborated an essentially new approach to
treatment of otomycoses; improved techniques for conservative and
surgical treatment of recurrent and chronic illnesses of the middle ear;
etc.
• At the Department of
Gastroenterology and Laboratory of Functional Gastroenterology,
advanced algorithms for examination and treatment of chronic hepatites
and cirrhoses, intestinal malabsorption syndromes, nonspecific
ulcerative colitis, Crohn's disease, etc. have been elaborated and
implemented.
• The Department of General
Endocrinology provides medical examinations and treatment to
children with constitutional, genetic, and endocrinological forms of
delayed growth. The doctors diagnose disorders concerning the physical
sexual development and perform their surgical and therapeutic
correction. Diseases of the thyroid gland and other endocrinological
pathologies are also treated.
• At the Department of Clinical
Immunology, the specialists diagnose and treat various immune
system disorders. Contemporary therapeutic programs concerning primary
immunodeficiencies, autoimmune and allergic diseases have been
implemented. Prenatal diagnosis of primary immunodeficiencies can be
performed. The all-Russian register of patients with primary
immunodeficiencies is under formation.
• At the Department of
Rehabilitation of Psychoneurological Disorders, novel methods
for correcting functional motor disorders in patients with neurological
and musculoskeletal disorders are constantly under development.
