The time has come for us to ask for your help. My name is Arthur, I am 33 years old and I have a two-year-old sister Iveta. We both have SMA - spinal muscular atrophy, also called muscle weakness. It is a rare genetic disease that we have been suffering from since childhood. Unfortunately, the disease is progressing. We have never walked and cannot take care of ourselves.
Since childhood, our parents have taken care for us. Now they are pensioners and it gets increasingly difficult for them to take care of us. Care is required 24 hours a day. Sometimes we experience breathing problems and it is hard to even sit. We also want to continue living in our home – in a small village near Daugavpils, together with our family and our trusted friends - cats and dogs. Therefore, financial support is very needed to equip our home with the necessary equipment and hire assistants to take care of us. It is very expensive.
State benefits are negligible. The state provides a support of 200 euros for hiring a nursing assistant, but it is not possible to hire an appropriate assistant for this amount of money. It is very important for us to equip our house with the necessary equipment. We also have a great need for a specially adapted minibus that would be used primarily for visiting medical institutions and for going to some events that we would like to attend. We also need a stair lift that would allow us to go outside more often and have a breath of fresh air. It is very difficult to do this now. It is almost impossible to leave our home right now.
We will be very grateful for any amount of money donated, and we will also be grateful if you could share this information on social networks. If you would like to know more about the help that we need, please contact us.
Iveta and Arthur