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 […]

166 weeks since diagnosis

It is almost a year since Inga started treatment in Milan. We would like to thank everyone who contributed to it by supporting one of Inga’s crowdfunding pages. Because of your support we were able to- – organise and start clinical trial for Inga in Italy – provide Inga with as many physio sessions as […]

165 weeks since diagnosis

Each of us loves to fulfill their dreams. For the last 3 years (actually for more than five years), we have one of the biggest ones – that our Inga would once make her first step … Everyone who has children remembers how his one-year-old child begins to walk. How much is joy then, parents […]

164 weeks since diagnosis

April is an important month in the history of our fight against SMA. It is a month when we went to Italy for initial trial examination, it is of course a month of Inga’s birthday and it is also a moment when in Poland you review your annual tax and you may transfer your 1% […]

163 weeks since diagnosis

We are slowly approaching Inga’s fifth birthday. Although the real ones are on April 20th, because of the hospital visits and the rehabilitation camp next 2 weeks Inga organized a birthday party for friends this weekend. The fun was great, many gifts received, joy everywhere. And we were probably most happy to see Inga’s happiness, […]

161 weeks since diagnosis

We have written to you recently how we try to do some exercises with Inga at every possible moment when we play with her. But nothing can replace real physiotherapy, during which we perform exercises in accordance with the best knowledge and experience of physiotherapists. Our “home” Neurorehabilitation Centre is a bit far away from […]

162 weeks since diagnosis

April came – the month of Inga’s birth. We are back in time for Inga’s 4th birthday a year ago: nervous waiting for an e-mail or phone call regarding a clinical trial, handling all formalities related to the registration, finding a flat, moving … In what other world we are living now, a year later… […]