Victoria was born with neurofibromatosis type 1 (NF1). It is genetic condition caused by mutated gene. It can cause very different problems in body during whole life. Currently Victoria has spots all over her body and tibial dysplasia, which turned into congenital pseudarthrosis. What it means is that her bones have weaker parts in the middle, which are breaking since she was 6 months old. After it broke again in may, it won’t hill. She is on waiting list for operation but the list is long and we do not even have specific date. Last time we have seen doctor we were told to wait – that’s all we can do. This operation is not very promising. As bone is not now able to hill, after operation it might also not heal and then amputation is only available. Problem is that Victoria is unable to walk anymore. She has severe pain in leg, she is waking up crying that she is in pain, she is crying during the day and when she is going to sleep. There is no pain killer for such young child (3 years old) so there is nothing we can do to help her.

Recently we found hope. Doctor Paley with his new promising method of treatment will perform operation to save her leg. After operation she will need intense physiotherapy to get back on her feet and money to get back to clinic for further treatment and checks.

We appreciate every help, thank you.