Diagnose: heterotype peripheral neuroectodermal tumor (Askin tumor) of the fourth rib on the left, extensive stage, and right lung, vertebrae and lymph node metastases.
Necessary: six intensive polychemotherapy courses, radiation therapy and four post-operation polychemotherapy courses.
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The money collected
01 March 2011
Nastya Medyannikova donation campaign complete
On 28 November 2008, the Union of the Charitable Organisations of Russia (UCOR) launched a donation campaign to raise money for then-four-year-old Nastya Medyannikova residing together with her parents in Uglegorsk town (Amur Region). Nastya suffers a rare disease – Type I-V mucopolysaccharidosis (clinical variant of the Hurler syndrome).
Nastya inherited a defective gene from each of her parents, which resulted in a defective factor-pair. Therefore, the girl has to take the expensive medicine Aldurazim for life.
UCOR was the first to come to rescue the child. Some time later, the newly-appointed governor of the Amur Region, Oleg Kozhemyako, decided to have Nastya at the expense of the regional authorities, which earned him the gratitude of the Medyannikovs, their friends and UCOR. However, we kept on the ball rolling, since the money for the medicine were allocated as of early in the year, while the need for the medicine had grown by year-end. Overall, we bought the additional medicine for Nastya, worth 1,203,807 rubles 70 kopeks.
We are happy to note that Prime Minister Vladimir Putin has not remained aloof to the future of Nastya. During his meeting with Governor Kozhemyako on 28 February, he wondered about the state of financing Nastya's treatment.
"Nastya Medyannikova has been provided with medicine. A governmental procurement tender will be conducted in April, and we will provide her with a 9.9 million worth of medicine throughout the year", O.N. Kozhemyako said told the premier (see ).
Since the problem of funding the girl's treatment has been resolved owing to the governor and premier, we have wrapped up the money-raising campaign in support of Nastya.
The remainder of the unused donations shall be spent on treating other seriously ill children that are not provided with free medical aid.
Nastya's parents and staff of the A Billion in Small Change charitable programme are thankful to all those who has responded to our call for help.
07.04.2009
Nastya Medyannikova, 7 years old
Address: Uglegorsk, Amur Region
Diagnose: Type I-V mucopolysaccharidosis (clinical variant of the Hurler syndrome)
Necessary: pathogenetic enzyme-substituting therapy with the use of Aldurazyme
Sum required: 6,552,000 rubles for the drug
Rubles: 6 552 000.00
Dollars: 157 230.14
Euro: 203 502.91
Still lacking: 4,980,124 rubles
Rubles: 4 980 124.00
Dollars: 119 509.40
Euro: 154 680.97
Nastya had fallen ill long before she was borne, but her parents learnt about it too late. When she was three years old, the little girl was examined at the Hereditary Metabolism Disease Laboratory of the Russian Academy of Medical Sciences. It turned out be that Nastya had inherited a defective gene variant from each of the parents, which resulted in an utterly defective pair of genes. Nastya's elder sister, Nadezhda, is lucky because the defective genes did not 'meet' in her system and, hence, she grew up virtually healthy, according to doctors. However, in Nastya's body, the defective pair of genes prompted a malfunction in the process of generating the enzyme responsible for decomposition and excretion of mucopolysaccharides. Since Nastya's birth, mucopolysaccharides have been accumulated in her system, disrupting the operation of all of her organs and systems - the cardiovascular, respiratory, nerve, locomotor and digestive systems, vision, hearing, liver and spleen.
Already in the maternity hospital, Nastya was diagnosed as suffering encephalic ischemia. When she was seven months old, limitation to her moving her legs and arms set in. When she turned 10 months old, inguinal hernia emerged. Aged 18 months, the girl suffered hydrocephalus.
With every passing month, Nastya has been diagnosed with new grave illnesses - heart disease, kerautoleukoma, opacity of vitreous body, umbilical hernia… The limitation on the movement of her legs and arms increases, with her limbs being half-bent continuously.
The outcome of the horrible disease is, alas, predetermined, unless it is treated. At first, Nastya will stop walking, then she will have breathing problems… The girl will have died by her 10th year, unless something is done now to save her.
Although she is only four years old, Nastya knows and can do a lot. She recites verses and fairy tales by heart, can count up to 10, knows the alphabet and even can put letters together into her first and dearest words - 'mom' and 'dad'. Nastya likes to help her mother to do dishes, vacuum-clean, tidy up the flat and watch cartoons about Leopold the Cat.
However, Nastya and her mother can increasingly seldom be found at home. Instead of the comfort of her home, the girl watches the white walls of hospital wards. Ever more often, Nastya and her mother are at various clinics of Moscow, Novosibirsk and Blagoveshchensk.
Unfortunately, doctors have been dealing with the effects of the primary disease, rather than the cause. The thing is Russia had not even had a Health Ministry-approved drug to counter mucopolysaccharides before May 2008. Nastya's parents were told in the Moscow Paediatrics and Children's Surgery Research Institute of the Federal High-Technology Medical Assistance Agency that the drug needed to treat the girl, Aldurazyme, had been registered in Russia only on 19 May 2008. However, import of the drug has not been launched yet, and, therefore, there is no Aldurazyme on the medicine market.
The first batch of the drug might have hit the market in Moscow by year-end, but it will be unaffordable to Nastya because it goes at over 40,000 rubles a vial, while Nastya needs 156 vials worth a total of 6,552,000 rubles for the yearlong treatment.
Nastya's father is a serviceman who would have to save his pay for several months to buy his little daughter just a single vial of the life-saving medicine. However, he cannot save because he is the only breadwinner for his family. Nastya's mother spends most of her time with her younger daughter in hospital, and her senior daughter, Nadezhda, is a pupil.
Abstract from Nastya’s parents to UCOR:
“Please, provide financial assistance in acquiring the medicine for our daughter. She needs 156 vials of Aldurazyme for one year”.
Additional documents and information:
The letter to the Union of charitable Organisations of Russia - letter text.
