Matylda is only few months old. If we do not help her now, she is bound to suffer enormously.
Our little daughter is such a vulnerable creature. She was born with a serious deficiency. Without help, she wil certainly suffer from a permanent disability. Several doctors have already suggested amputation of the affected limb. We do believe however that Matylda can lead a normal life. We hold the hope that she will be a healthy girl who will be able to walk. To make this dream come true, Matylda has to undergo some surgical procedures. This is the reason we are desperately asking for your help.
‘I cannot see her toes’ – said the doctor who was performing anomaly scan. He comforted us by saying that this does not necessarily mean there is something wrong. ‘Perhaps the leg has just bent’ he said. To be sure, we saw another doctor for a second opinion. He also was convinced that there was nothing to worry about, which was very reassuring. We were looking forward to Matylda’s birthday. The day we found out about pregnancy was the most beautiful day in our lives. Only the day Matylda was born could be happier. We had not expected the nightmare which followed her birthday.
When our daughter was finally with us, we just wanted to know whether she was healthy. ‘What about her leg?’, ‘Are the toes there?’ – we were asking anxiously. ‘Yes, everything is fine’ – doctors calmed us down. This false hope was quickly taken away from us. The doctors were looking at the left leg, which was healthy. Only later they manager to diagnose deficiencies in the right leg.
Matylda’s right limb is much shorter and deformed. Some bones failed to develop, including fibula and foot bones. Tibia and femur are much shorter and in bent position. Besides, four toes are missing. The existing one is deformed and bent. The result is that Matylda is unable to walk. She will never be able to walk on her own if she is not operated on.
The shock we experienced after Matylda’s birthday was followed with brainstorm, cry and tremendous stress. We could not stop wondering why has fate proved to be so cruel for our baby? ‘She deserves best things in life after all and not this disability!’ We did not realize then how terrifying disability it is. We found out later that Matylda was born with fibular hemimelia, which is both a very serious and very seldom condition. It occurs rarely not only in children in Poland but also all over the world.
Our life has changed drastically. Not because we became parents of a little girl but because we started spending nights in the internet searching for help, for information on leg-related abnormalities, for means of treatment, and for contacts with other parents of disabled children. After short breakdown, determination and will to fight occurred. Matylda is our whole world so we will do everything to cure her. We attended another private visit. The doctor said that he could try to cure Matylda but that would mean a series of long and complicated surgeries. There was no guarantee of success however. We cannot allow for the possibility that Matylda will suffer long-term pain due to a series of complicated surgeries that will bring no benefits, just pain and trauma. Furthermore, we are much afraid of lack of professional experience in this respect. We do not want our daughter served as a guinea pig to doctors since it concernes her health and life! Orthopaedic specialists and physiotherapists suggest we should agree to the leg’s amputation. Matylda would have a prosthesis for the rest of her life. We do understand amputation in case of a life-threatening situation or necrosis. However, Matylda’s leg is warm and active. Our daughter is moving the leg and is playing with it. How can we allow someone to cut it off?
No such centres that would treat Matylda’s defect exist in Poland. There is only one in the world, namely in the USA. It is called Paley Institute. Children leave the institute on their own feet! They walk, jump and run on their own not as a result of amputation. Doctor Paley is an outstanding orthopaedist specilizing in treatment of the most serious orthopaedic defects. We managed to attend a consultation visit with him when he was in Europe, in München. He showed us photos of a boy who was diagnosed with the same deformity Matylda has. We saw the before and after surgery photos. Today the boy is healthy! There are no traces of his previous disability. Dr Paley presented us with a detailed treatment plan. First, foot reconstruction surgical procedure called SUPERANKLE would be performed followed with bones lengthening procedure and completed with physiotherapy. We sincerely burst out crying beacuse the doctor gave us 100% guarantee that he will help Matylda!
Unfortunatelly, medical care in the USA is one of the most expensive in the world. Matylda’s operation and physiotherapy in Paley Institute will cost 169 thousand dollars. This is the price for our daughter’s ability to walk on her own and live a normal life. It is our only dream and only goal right now. We do regret that we cannot afford the treatment and therefore have to ask for help. We have no other choice however. The only hope is that there are people who will be deeply moved by Matylda’s story and will want to help change her life. You really can help our daughter become a healthy little girl. Please, help her!