Life without disability – that’s all I want for my child!

URGENT! Victoria’s leg broke so many times that it stopped healing. This little girl feels unspeakable pain! There are to options: amputation or operation that will save Victoria’s leg and will give her full recovery. Even though choice seems to be obvious, the good option cost fortune. Until the end of July parents have to raise unbelievable amount of money and time is our enemy because every day make her chances smaller and the leg is getting worse. Your help is needed.

Anna, Victoria’s mum:

Our daughter will soon be 4 years old. When she was born, we thought that she is healthy as any other child. She was so calm and quiet… I was laughing that only unhealthy children are so quiet. Later we found out I was right… Victoria was 6 month old when her leg twisted, she was crying a lot. When we got to hospital it turned out that leg was already broken before! But when? Where? We couldn’t believe it… Then we got her diagnose. Victoria has genetic condition called NF1. We were told straight away that it can make many different effects that will appear during her whole life… Victoria’s main effect are café au lait spots all over her body and tibial dysplasia that later turned into congenital pseudarthrosis. It scares all the most.

We were told back then that it may end up with amputation. Doctors keep telling how is that good option for Victoria. In those cases many operations results in failure because that condition in not very well known, not many specialists can deal with it. We watched our poot daughter and her leg… How could we make decision that would make her disabled for entire life?! The fight for her started.

Victoria’s doctor kept her in cast or splint. However it didn’t stopped the leg breaking again and again. Since May 2018 leg is not breaking any more. It simply stopped healing… Every break brought more and more severe pain, appointments and another “there is nothing we can do until she gets bigger”.

Every break gets her closer to amputation. Bone is bending quicker making Victoria’s mobility getting worse. Today she depends on wheelchair. Her bend and broken bone keep her in pain that is hard to imagine even for us – grown ups. Victoria wakes up in the middle of the night crying, pain won’t give her a break even then. There is no pain killers for such small child so doctors give paracetamol. It’s not helping at all.

The worse thing is that Victoria used to this pain and that is not like other children. However for a while now, she feels worse mentally. Instead of getting physically better like children her age, she looses it. She never run in hr life. It breaks my heart when I see her giving up. She used to try to play with children, she doesn’t anymore. Kids are walking away when she comes to them on her knees – but she can’t walk…

Victoria was always smiling and happy with every little things. She was star in every hospital, she quickly made friends in plaster room. She always laughed and never moaned. She is very young but brave.

Situation makes her less happy. She stopped smiling. She is now sad, irritated, she doesn’t understand what is going on… Why her leg is like this, why is hurt so much? What is that mean they want to cut it?

Her doctor put her on waiting list for operation a year ago. His lists is very long but not every child has such serious problems. Not all of them are threated with amputation! The longer we wait the closer we are to make this terrible thing to happen. We call, we ask, we beg. Even Victoria’s physiotherapist intervened – still nothing. She can’t be wined up to the top of this lists. She can be there for another years and we are counting days! When we were desperate we found out about doctor Paley – specialists who has new method with 100% positive results!

Dr Paley works in USA but last year he also treat children in Poland! Two doctors from his team is now permanently in Warsaw clinic European Paley Institute. We went there. Dr Albrewczynski knew straight away what he is dealing with. He gave us hope – after the surgery Victoria’s leg will be straight, healthy and will never break again! New method, complicated operation and hope that we waited for years! Unfortunately there is a price… Victoria’s operation is planned on 5th of September but we need to pay for it ahead in July. We can’t do it without help…

There are only two options: accept for amputation or give our daughter happy and normal future, without pain… We beg you, help our daughter. There is still a hope!