My name is Natalia Klimishina. Please consider the following proposal regarding my daughter who is seriously ill.
After a polio vaccination my daughter, Kate Klimishina (1 year and 10 months old), became seriously ill, she was diagnosed with atypical hemolytic uremic syndrome (aHUS). As you probably know, this is a very rare and severe disease, which can result in death or severe impairment of the vital organs. My daughter is currently in the Moscow Centre of gravitational surgery of blood and hemodialysis at the St. Vladimir hospital. Kate was also diagnosed with acute renal failure, arterial hypertension in the 2nd degree and she is on permanent peritoneal dialysis.
According to the doctors there is a high risk of aHUS relapses resulting in chronic renal failure. Considering the difficult treatment for aHUS, the high risk of developing life-threatening conditions and end-stage chronic kidney failure the child needs the life-saving ECULIZUMAB (SOLIRIS) therapy.
As far as I know, Soliris was registered in the USA as the first line of treatment of children and adults suffering from aHUS. This is the only high-performance treatment for this severe disease. In November 2011 Soliris received state registration in the Russian Federation, but is not distributed in Russia to date.
Soliris is not included in the RF Ministry of Health list of medicine which doctor’s can prescribe for those receiving free medical treatment for rare diseases, so my daughter was denied this medicine. Unfortunately, due to the high cost of the medicine, we are not in a position to purchase this medicine independently for our daughter.
We have very little time - the medicine needs to be injected immediately. Initial course - 600 mg per week, then 300 mg in the second and third weeks - and then 300 mg once every 2 weeks during 1 year. In Russia one vial of the medicine costs RUB 320 000 (1000 $) and for the initial therapy my daughter will need 8 vials. For the annual therapy Kate will need 30 vials in total. Total sum 9.600.000 RUB (300 000 USD).
on 2012/04/14 we raise funds 3 899 452 RUB + 1201$ (about 120 000 USD = 40 % need Sum)
I’d like to thank you for considering my request and very much hope for your help and support.