Clinical trials
In June of this year we got hope at the SMA conference, which is held annually in the USA. There is quite a large amount of research of this disease going on. We want to get in one of these trials!
Wheelchair-accessible home
After consulting with others we decided against moving from the first floor to the ground floor. We will stay on the first floor and build a wheelchair lift, adjust thresholds and bathroom.
Car modified for a wheelchair transfer
One would never tell what awaits ahead. At the beginning it was just the desire to make an independent movement possible for Bozhenka. The first thought is to acquire a wheelchair for her that would enable her to go around independently. However, once you are about to get it, you find out that everywhere around you there are barriers for the wheelchair. For example, we can take a train (part of Prague public transport) from our house and get quickly to the downtown but then we are stuck at the platform and can, for instance, watch the trains passing... But there is no wheelchair-accessible exit. The power wheelchair weighs around 100kg... We need a car, which will have the capacity for the wheelchair and the rest of the family. So there is a next challenge ahead of us.
Personal assistance
Bozhenka is growing and expressing her will to be an independent person. We are beginning to see that we will need personal assistants for her to enable her to be "on her own" and enjoy all the desired activities. She also wants to be without her parents for a bit:) She started to attend the preschool for two half-days, where she is with her assistant Jana and she likes to tell us: "Go away now and then come to pick me up." In the future we will probably need more assistants, so that Bozhenka can do what she wishes. Sometimes we do not have enough hands:)
Other tools
- Stander