Rose is just two years old... Why does she have to suffer as much as she does? Why does she have to face such a terrible illness? Tumours in her whole body are dangerous however today the biggest problem is her leg. Her bones keep breaking, even when her leg is secured with a brace. It's difficult to even imagine how painful it is for such a little child... My daughter can lose her leg. If we can't make it on time for the surgery her leg will keep braking, which in time will lead to an amputation! Our only chance is dr Paley who has set the surgery for January... Please help my daughter!
Fibrous dysplasia of bone brought about by a congenital defect. She will be wearing a brace for her entire childhood to protect the weak bone from breaking, however her leg will never be straight- is what I heard from an orthopaedist. Rose was just 2 months old and was sleeping while the doctor was examining her. I looked at my beloved daughter and couldn't believe what I heard the doctor say. -But children have softer bones, she will wear a brace for some time and everything will be fine- I said with tears rolling down my face. The doctor just shook his head sadly not knowing what else to do or say...
Not only is her tibia very weak it's also shorter and keeps growing slightly curved, all because of a congenital defect. It just keeps breaking, causing little Rose pain that keeps breaking the parent's heart. Once broken it never heals, creating false joints and her leg is bent in an unnatural way. Walking without a brace increases the risk of breaking the tibia, which in turn makes our baby suffer greatly. Recently her bone broke again, and this time while wearing her brace. It's getting worse and we are worried about the future, worried that our daughter Rose will be left without a leg.
I'm already imagining children at school laughing at my daughter for not being as able bodied as they are, that she isn't playing football with them but staying at the sidelines. Not climbing trees but just watching her peers. Quietly, alone in the corner...
We just got a new brace and it looks dreadfully, Rose doesn't want to wear it and keeps crying. She is very energetic, she wants to walk and explore the world. How do you explain to a child that they can't walk? I can't just tie her down to a bed.
Despite suffering through so much she keeps smiling, is happy and loves people. Rose has finally learned how to walk with her brace, and now after the recent fracture she needs to crawl again. She keeps crying as the broken bones cause a lot of pain. Each time we visit the orthopaedist to get a brace fitted it ends with my little daughter crying, yelling and afraid because of the pain. She tries to run so much that I can't calm her down and feel tears welling up from felling helpless. I hold her tight in my arms wishing that it could end and we wouldn't have to come here ever again.
The fibrous dysplasia of her tibia, which is causing all of Roses' suffering is caused by a congenital defect, neurofibromatosis type I (NF1). Her whole body can develop tumours, more or less dangerous. We learned of it when Rose was only a couple months old, our world fell apart. We visited numerous neurologists, oncologists, orthopaedists and pediatricians in Warsaw and Poznań. We read numerous articles online, after which we felt even worse. In the beginning I kept crying nearly constantly blaming the world for my daughter being the one to be ill. But we had to get up and fight, for Rose. NF1 is a genetic disease that can't be cured and can happen in 1 in 3000 births. It causes many tumours to grow anywhere in the body, including the optic nerves, on the inside of the skull and the spine. During genetic testing doctors came to the conclusion that Rose is the first one in the family to have this defect.
As our neurologist said we were unlucky. There are many symptoms and we need to remember of how important are frequent eye checks(every half a year) as well as MRI scans of her head and spine every year. To make the whole situation worse Rose already has a peripheral nerve sheath tumour growing in her spine, and recently a new one appeared in her head. We are terrified as epilepsy is quite often caused by NF1 as well. And right now we have to deal with the suffering that Rose is going through because of her leg. Desperate to find a way to help our daughter, we begun searching for information about this disease and that's how we found dr Paley, an orthopaedist known around the world, he agreed to conduct surgery on Rose in Warsaw on 10th Januray 2020!
He guaranteed that after the surgery her leg will not break any more, this gives us hope that Rose can have a childhood like other children. So far it's only a dream as the amount we have to pay for the surgery is impossible for us to gather on our own. The entirety needs to be paid by 10th December which leaves us with little time. We believe in your good will and that you will not let an innocent child suffer. We ask for your help even if it will be sharing this plea to others. Each sum is a great help for our daughter in easing her pain. Without you we can't save little Rose.