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

What we already have thanks to all of you!

Power wheelchair Koala - donated to Bozhenka by the company Mebatex. This disease accelerates brain activity and therefore there is no reason to wait. In terms of Bozhena's psychological development she needs to gain her independence in order to be able to fully develop. That is why the power wheelchair Koala is an essential part of Bozhena´s equipment. Now we just need to build a wheelchair lift, so that we can take trips outside. So far Bozhenka demolishes the interior, wait for when she gets into the traffic :)

Pulse oximetr - we got it from Petra Najmanová! Thank you!

Upsee - it is already awaiting us. Great thanks to Smarties KinderGarten, Markéta, Soňa, Michal and Olda for organizing an #UpseeChallenge

CoughAssist - only a week after we got it, it was a crucial help to Bozhenka with overcoming pneumonia. Now we are waiting whether at least a little bit might be reimbursed by our insurance company.