176 weeks since diagnosis

Last week Inga had another visit to the hospital. This time, a check-up in London. First, physical fitness was tested. Physiotherapists were full of admiration for Inga for the precision and diligence of doing all the exercises. In addition, they noticed improvement in Inga when it comes to the power and speed of doing exercises. […]

175 weeks since diagnosis

Last week we visited again Mrs. Alex, who using different orthopaedic equipment can apply Inga a lot of interesting exercises. Despite the hot day, the girls worked hard, and the parents watched carefully to repeat the exercises at home every day. And our Inga, who subconsciously feels she is stronger, most exercises performs with pleasure […]

174 weeks since diagnosis

Do you remember Inga’s birthday crowdfunding? Thank you for such a large share and support. Thanks to the collected funds, Inga attends hippotherapy classes almost every week. As we have written many times – she loves it very much, and we have the assurance of the physiotherapists that it is very helpful for her (especially […]

173 weeks since diagnosis

Last week Inga had another visit to the hospital in Milan. But staying in Italy is not just examinations and treatment. It is also an opportunity to play in the water, which is also a great rehabilitation for Inga. Inga can move without using splints and walking sticks. And in the attached movie he can […]

172 weeks since diagnosis

After last week’s post about rehabilitation, a few people asked us why we exercise so much with Inga, since she takes the medicine and we believe that it works? However, with the spinal muscular atrophy that matter is not so simple … The drug affects the production of missing protein (SMN), which patients with SMA […]

171 weeks since diagnosis

Last week Inga spent hard exercising during a rehabilitation camp at the Neurorehabilitation Center. We are very proud of her! Similarly, all of the clinic’s employees are proud of her, including Mrs. Sylvia from the reception with whom Inga wants to race in wheelchairs;) We thank all the physiotherapists for their hard work. And thank […]

170 weeks since diagnosis

This week Inga spends at rehabilitation camp at the Neurorehabilitation Centre. She does many exercises to become a bit stronger and a little more efficient. We are very proud of her! We cannot stop thinking about the last week’s information about the new drug (Zolgensma), which has just been approved for use in the US. […]

169 weeks since diagnosis – 1 year since trial start

Last week, Inga was in a hospital in Milan. This is one year from the start of the clinical trial of the new drug – Risdiplam. In May 2018, we were entering the unknown with Inga… A new country, a new hospital, a new language. As it turned out, our decision to start treatment in […]

168 weeks since diagnosis

This week, Inga is undergoing a series of tests at the hospital in Milan due to the anniversary of starting the clinical trial. She is very brave. Though, for the last year, it is her daily bread … Such life … In a week we will let you know how the tests came out. Keep […]

167 weeks since diagnosis

Like every 5-year-old, Inga has her big dreams. And probably not necessarily the dream about the first step is the most important for her. Inga constantly wonders instead who she would like to be when she grows up. Recently, she wanted to be a doctor, then a teacher, and in the meantime also a firefighter […]