125 weeks since diagnosis

Yesterday Inga’s mummy celebrated another 18th birthday. There was b-day cake of course. This year Inga helped to put candles on it. And that was the best present she could give – her independance, we hope will increase in the nearest future during clinical trial treatment. On Friday Inga had another hospital appointments. This time […]

124 weeks since diagnosis

It’s been already 7 weeks since trial started. We believe Inga gets active medicine (not placebo) and thanks to it she becomes stronger. Or maybe it is just an illusion and we see only what we want to see?… We have no clue. But we have noticed small details and signs that make us think […]

123 weeks since diagnosis

There are so many weeks since diagnosis… But what is more important we count also weeks since treatment’s start. So today we have six weeks already. This week is even more happy – Inga and her mum are back home for 10 days! It is a great feeling to be all together. Lots of people […]

122 weeks since diagnosis

It is already more than two years ago when Inga was able to stand. Since than she is able to stan only wearing splints, which bone her legs from bottom of feet up to thighs. Since we start treatment we believe that maybe one day Inga Inga will stand on her bare feet again. That […]

121 weeks since diagnosis

It’s been already a month since Inga get her first dose of medicine. Despite our family’s separation (Inga with her mum are in Italy, dad and her brother stayed at home) we are truly happy. It is a great feeling to finally have a reasoned hope for Inga’s health improvement. This week Roche company released […]

120 weeks since diagnosis

Inga has been taking medicine for 3 weeks. We will probably have to wait a few or a dozen months for the effects. However, we can already see how new hope and faith in a better tomorrow helps us in our fight against SMA. Despite the separation (girls in Italy, boys at home) days seem […]

119 weeks since diagnosis

We have noticed recently that Italy was present in our family’s life for many years: we’ve spent there honeymoon, Inga’s mum supported Italy during World Cup 2006 final in Berlin, Inga’s brother Maks supports Azzurri since he was born e.g. during 2008 and 2012 championships. When Inga was 2 months old she kept her fingers […]

118 weeks since diagnosis

Our live is made of happy days mixed with moments of sadness. On one hand Inga started treatment – which is great! But on the other hand she is still ill and she will need extra care probably till the end of her life. That fact somtimes defeats us but we know we must be […]

117 weeks since diagnosis – 1st week of treatment!

Dears – it happened: Inga started treatment. The day we’ve been dreaming about for 117 weeks has finally come.   Before we write any more, we would like to thank all of you – without your support this day would not come as soon as it was only possible. Thank you to those who have […]

116 weeks since diagnosis

Those of you who has ever been in mountains or have a walk along the beach knows how much pleasure it brings to everyone. With Inga’s case it a little bit more difficult but it is not impossible. Last weekend we went for a walk by Southerndorn Cliffs. We made a deal with Inga – […]