108 weeks since diagnosis

For the last few months Facebook reminds you what happened on this day but few years ago. Yesterday it reminded us about one March afternoon in 2012. On that day w climbed Sleza Mountain with our 4-years-old son Maks. He run all the time around us climbing every little stone and rock. When we climbed […]

107 weeks since diagnosis

Spring is coming – you can almost feel it in the air. The laughter and screams of children playing in the yard are more often to hear. We would like Inga to join them one day… So far, our little girl wants to learn how to dance. She noticed that in splints she looks almost […]

106 weeks since diagnosis

Weeks go by… There are more countries in Europe which decided to reimburse SMA treatment (last week it was e.g. Hungary). We do not wait until Spinraza will be availble in UK and try to find a treatment anywhere it is possible. It is not easy but with your support we do as much as […]

105 weeks since diagnosis

Last week Inga spent on five physiotherapy sessions. Four great physiotherapists from Centrum Neurorehabilitacji have been working on Inga’s strength and shape. Every day for 4 hours Inga had massages and stretchings, has been playing physio games. Inga’s mummy has watched everything very carefully to repeat those exercises later at home. Inga was the first […]

104 weeks since diagnosis

Today Inga started physiotherapy course that will last for a week. Everyday she will do planty of exercises under professional supervision of physiotherapists. We hope it will keep her fit while waiting for a treatment we believe comes later this year. Thank you for your support! https://www.justgiving.com/crowdfunding/INGA

2 years since diagnosis

Exactly two years ago the saddest day in our lives has happened. On Monday 15th January 2016 we got diagnosis of SMA… That day has begun as usual. Gosia went to work before 7 am. Later mum came to take care of Inga while Maks is at school and me at work… (The rest of […]

103 weeks since diagnosis

Yesterday Inga went with her brother on skating rink to see how he skates. She was very excited about that much less we have just watched speed skating in TV during Olympic Games in Korea. Unfortunately her joy has disappeared the moment she spot high fence around ice rink. She looked like she wants to […]

102 weeks since diagnosis

Apart from the fact that Inga is a person who suffers from SMA, she is above all our beloved four-year-old girl, having her dreams, joy, sorrows and ideas. The ideas… Her last week idea was simple: “I want to be a hairdresser”. From that thought she went straight into action – her beautiful curly fringe […]

101 weeks since diagnosis

The last week has passed under the mark of the International Scientific Congress on SMA in Krakow. Almost half a thousand participants, dozens of presentations, poster sessions, meetings with pharmaceutical companies, working dinners and backstairs conversations. Almost all doctors and scientists responsible for develop the treatment of spinal muscular atrophy in the world have appeared […]

100 weeks since diagnosis

It’s been 100 weeks since the diagnosis. 700 days. Days devoted to Inga and its struggle with a terrible disease. The days during which Inga stopped walking, stopped standing by herself, stopped climbing small chairs, stopped crawling with strength and happiness. We were getting weaker slowly every day – only photos and videos from time […]