Hold out a helping hand to Maja. Help write the happy finale of her story!

Maja is 4 years old and she is absolutely special. Not because she is sick and looks different… she is my daughter, a miracle, and I will do my best to make it last. Her smile brightens even the darkest day; it is the best remedy for all troubles. There are a lot of them, but we cannot give up. Please, help Maja.

My daughter has a rare genetic disorder called Cornelia de Lange syndrome (CDLS). This disorder involves a range defects and challenges, ranging from mild to severe. Fortunately, Maja’s heart is healthy, which is a great relief for us. She has got small, but skilful hands, she often smiles and laughs. Since her birth it was difficult to feed her, but we did our best to avoid tube-feeding or PEG, and we managed to feed her with a bottle. Because of that, Maja did not put on much weight, but we kept fighting.

Soon my daughter will be 4, although she weighs less than 8 kilograms. She is like Thumbelina. Her psychomotor development is delayed. As late as in September 2018 she started crawling; now she is learning to walk. It is not easy for her: she has contractures in elbows and knees, as well as hypertonia. Maja undergoes intensive physiotherapy. She goes to various physiotherapeutic sessions which significantly improve her motor skills. It costs a lot of money, but we are doing our best to carry out those actions. 

Apart from motor problems, Maja’s hearing and speaking is impaired. She does not use any sounds consciously. We fight for her to understand us and to respond to our words or gestures. Maja is still unable to eat on her own. Despite all those challenges, our daughter is happy. She loves people and she is fond of her kindergarten.

Every day we work hard to help Maja learn as much as possible, so that she can master new skills. Her skilfulness and independence  are our goals. We know it will take a lot of time, but we do not give up. There is an experimental method that – in many cases – proved to be effective, and we hope it can also be helpful to our child. The method is transplantation of stem cells from umbilical cord blood.

Such transplantation has been used to treat children with cerebral palsy or other neurological disorders. After a few stages of the treatment, some children who had not spoken begin to utter their first words, improve their concentration and communicative skills. We would do anything just to improve Maja’s condition a bit, to make things easier for her, and to help her become more independent… 

If Maja started speaking, I would be the happiest mum in the world! This is what we hope for as far as this treatment is concerned. After the consultation with the neurologist who decides whether a child can undergo transplantation of stem cells, we are full of hope for Maja’s better future. However, this method brings the best results among the children under 6 years old. There has to be a six-month break between one stage of the treatment and another, so we do not have much time…        

We have got three children, including one who is ill and needs expensive physiotherapy. That is why, we cannot afford additional expenditure, and the transplantation of stem cells is very costly... However, we believe in the power of the Internet and people’s goodness, which is why we want to ask you for even the smallest support. Each amount of money is important.   

What seems impossible for one family, becomes real with the smallest support of many people. Please help us and tell others about our request… thank you for everything! 

Justyna, Maja’s mum