17 November 2009, Tuesday, 15:51
author: Elmira Sabirova | photo: Andrey Starostin
"Problems of handicapped children can be solved by effective cooperation of the whole society — state agencies, business structures, charitable foundations," Eleonora Romanova, the president of the regional charitable public foundation "Society of the disabled having Hunter's syndrome and other forms of mucopolysaccharidosis or other rare genetic diseases" said at the press conference in the news agency "Bashinform".
According to Ministry of Health RB, 4 children suffer from Hunter's syndrome in Bashkortostan now.
"It is a genetically determined disease, caused by deprivation of enzyme responsible for extermination of toxins, which are eventually accumulated and poison an organism", Almira Baiturina, the head of the department of medical problems, maternity and childhood of Ministry of Health RB, said.
The only thing that can help and support sick children is an expensive genetic engineering medicine "Elarplase" containing the lacking enzyme.
"This medicine should be injected every week throughout a sick person's life," Almira Baiturina said, "The trouble is that one ampoule costs 211 thousand roubles. The dosage for every child depends on his/her body mass, age, etc. Our children need two ampoules every week, that is 2 million roubles for us. We are looking for an opportunity to include this medicine to the list of the drugs that are supplied from the federal budget resources. We try to use all the possible ways."
Government RB allocated 26 million roubles for treatment of children with Hunter's syndrome. This money will last children for six months. Besides, there is an account for collection of voluntary donations from individuals and legal entities under Emergency department of Government RB. There is 7.6 million roubles on this account now.
"The treatment is carried out in the Republican Children's Centre of Psychoneurology and Epileptology," Almira Baiturina explained, "There is a sensible change for the better in children's condition. After the treatment is finished, the assessment of the neuropsychic state of children will be made."
Andrey Belov, the Chief Specialist of the Bashkir regional department of United Russia party emphasized that this work should be systemic.
"We are ready to conclude an agreement about cooperation with your regional charitable foundation and to make plan of those problems that need to be solved," he said.
"Families bringing up handicapped children should receive support on all levels," Eleonora Romanova stressed, "We must not stay indifferent to their problems."