Our daughter Lilya is 4 month old. We looked forward to the birth of this child, and we love her very, very much. Since the age of one month, she has to wear special splints, since she has a congenital hip dislocation. But still she turns from side to side and smiles happily at us. But suddenly we were admitted to hospital, because she had heart problems. We were frightened to learn about this disorder, but the worst was still to come: she was diagnosed with mucopolysaccharidosis type 1 (Hurler's syndrome). Children with this disease have very short lives full of suffering. All parts of the organism, including the central nervous system, are affected.
However, the physicians say that we are more lucky than many other families. Lilya's disorder has been diagnosed very early, and now she has a chance to become a normal child if she undergoes bone marrow transplantation. She is our first child, and so there is no related donor for her. Russia has no large data bank of its own, and search for a donor is to be performed in an international data bank. However, this search costs a lot: 15,000 euro!

Please help us raise money for Lilya! Please give her a chance to live, to study, to run, to speak...

We thank you for any kind of support!

With hope,
Anna and Oleg Klepikovskii
June 18, 2009

The doctor's comment

A joint meeting of specialists at the Russian Children's Clinical Hospital (June 3, 2009) discussed further therapy of patient Lilya Klepikovskaya, b. Feb 2, 2009, with diagnosed mucopolysaccharidosis type 1 (Hurler's syndrome). The only possible way of curing this disorder is to perform allogeneic transplantation of hematopoietic stem cells as early as possible, before lesions of the central nervous system and other organs develop. The child has no related HLA-matching donor, and so search for a donor of hematopoietic stem cells should be performed through an international register. If an HLA-matching donor is found, the child will be urgently directed to the Department of Marrow Transplantation of the Russian Children's Clinical Hospital.

Physician-in-charge S.V. Mikhailova

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