For another miracle to happen in Maja's life

When other children are happily riding on roller-skates, Maja looks at them sadly. For three years the muscles in her legs have become weaker and weaker. She looks at her feet, once efficient and now practically immobilized because of her knee high orthoses. She wishes to dance and to feel a cold breeze on her face as she ice-skates – unfortunately, she can't. Maja was born with Spina Bifida, everyday this disease tries to take away her strength.

Maja feels less and less. She can't feel pain in the lower part. Whilst walking, she hurts her feet but doesn’t feel the pain. Her gait deteriorates considerably fast, her feet are crooked and she barely has any control over them. Maja is the most delicate person imaginable but her sick body doesn’t let her express it.

When the ultrasound showed that it was a girl I cried with tears of happiness but when the doctor noticed something wrong I cried with despair – a lump on the spine

Doctors had no doubts about the diagnosis. In my head, although I did not want to do so, lived the darkest thoughts. I read about children living with Spina Bifida  and Spinal Hernias. Maja was born with this. I knew most of the children born with this disease would not be able to walk and to lift themselves up  independently. This disease has no cure

This was the time when the more I wanted to be strong the more I cried. In my head I saw what I feared the most, my daughter in a wheel chair from which she would never be freed from.

Maja walks, but whenever she walks with me I tremble with fear that someday we will loose what we are fighting for...

I wanted to maximise Maja's chances of exercise. The prenatal examination found a defect at the right time. I decided to undergo surgery when Maja was still in my tummy. I knew that this wouldn't cure my daughter but I knew it could at least help her. I couldn’t believe the diagnosis.

The operation speeded up birth – my daughter weighted just over 2.5 pounds when she came into the world! Premature birth may have been very dangerous for Maja, but fortunately everything was fine. When she was born the doctor said something that I'll never forget: she moved her legs, please fight, maybe she will walk.

From the first days of Maja's life we fought together. When she was just three months, Maja was put on the operating table (the rupture was closed). I fought for my daughter to have a chance at being a healthy girl without a disability.

The hope that the doctor gave us has become a reality. Maja was two when she started to take her first steps. This was my miracle. Maja had a big smile and her eyes were bright as she walked beside me. For her this was natural, she didn't know she was ill. She had no idea she had great strength. Without this strength, we would not be doing what we are now.

April 2014 – Maja underwent a surgery to untangle the spinal nerves. In her thigh was a lipoma threatening not only her fitness but also her life! The operation was supposed to ease Maja's life with Spina Bifida, but instead of helping her, it weakened her, resulting in partial paralysis of the legs. From that point on, walking is really difficult for Maja. Certain nerves were permanently damaged.

Since 2015 Maja has worn orthoses – shoes made especially for her every 6 months. They go up to her knees, limit her movement and are very expensive. She is also under constant medical care from the clinic in Aschau, they have plans on how to help Maja. The third operation to untether the spinal nerves was carried out in June 2015 – this was a successful operation and helped Maja to gain the power she lost a year earlier. Unfortunately, the damaged nerves didn’t regenerate. I am so afraid that it will get worse, that she will feel even less and that one day she will have to be in a wheelchair... I do not want that my daughter feel that she is different than any other child.

Maja is only a few years old and although she doesn’t yet understand, she knows that she has a disability, that she has to keep exercising and she knows that she sometimes needs to stay in hospital. She doesn’t know that she will never be perfectly capable and she doesn’t know that she will never be cured. She will have to fight her whole life for what we have achieved so far... for some time my motherly heart has been breaking. I was looking for help for Maja. I'm a mum, I will always fight for my daughter and now that I know there is a cure I will never give up!

I don’t know what the future will be like for my daughter. I know she will have to be strong and fight for her capability. But this doesn’t mean that she will be disabled! In The Aschau Clinic there are specialists who can help my child. In order for Maja to walk and to be given a chance to live a normal independent life without a disability, she must undergo soft-tissue surgery. Half of the tibialis posterior muscle will be transferred to the short sagittal muscle. The operation will make another miracle – Maja will wear orthoses that will only go up to her ankles, it will make her daily life much easier!

The miracle is that Maja is walking. Despite all the diagnoses and against all odds, we can't lose that miracle as it is a real gift! I need to raise 27000 EURO for my daughter to have a chance at everything beautiful, for life without pain, without a disability, free from deformities and without a life in a wheelchair... Please, help us! I am a single mother – its only us. Maja has her whole life ahead of her and I want her to be happy...

Mum – Małgosia