115 weeks since diagnosis

Our weeks go by relentlessly… We wish Inga has already treatment, that slow down or event stop disease progress. While waiting for a drug we do not stop doing physio. But not only during special sessions and while attending swimming pool but also during our “walk” in the park. This time Inga was doing exactly […]

114 weeks since diagnosis

We have noticed, our life is like a race. Every day we challenge SMA monster to win. Thank God we have our pit-stops: physiotherapy and other exercises. Although it is not allowed to fuel during F1 race anymore we still fuel Inga: a proper diet has been implemented and we fight for a drug to […]

113 weeks since diagnosis

Last Friday Inga celebrated her 4th birthday. She wear her beautiful dress, asked to wash her hair with mummies’ shampoo and later help her brush them and put her favourites hair clips on. There were quests later in the evening, there was a b-day cake with candle, there was music and a lot of smiling. […]

112 weeks since diagnosis

Last week Inga spent at physiotherapy camp in the Neurorehabilitation Centre. As usual, there were massages, stretching, ball exercises, breathing exercises and more. However, there was a new one: hipotherapy, which is the rehabilitation with a help of horse. A lot of people advised us this form of exercise until we finally decided. And it […]

111 weeks since diagnosis

It was a week full of GREAT emotions for Inga – our little girl was attending the SMA Conference for the first time in her life. We were concerned about whether she would find herself among hundreds of other children with this disease she will see for the first time. In addition we, wanting to […]

110 weeks since diagnosis

Wheelchair – symbol of disability. Inga has got her first wheelchair almost 2 years ago. But she has been using it only at home and at school. During outdoor walks or shopping we have always used buggy. We think we have been ashamed to use wheelchair a bit. Or we still didn’t want to accept […]

109 weeks since diagnosis

Spring and Easter are coming. We hope that warm weather will allow us to finally get out of the house and spend more time with “mother nature”. Movement and fresh air are very helpful to Inga and give her strength to fight her weaknesses. If you want to help – visit: https://www.justgiving.com/crowdfunding/inga Thank you very […]

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 […]