133 weeks since diagnosis

Last week Inga had hospital appointments in London. We’ve been curious how she will pass physiotherapist examination. And she did it quite good. Since last visit in London she improved her arms and neck strength. It is still too early to certify Milan clinical trial influence. But London doctors enthusiasm and positive examination results gave […]

132 weeks since diagnosis

Family holidays. Every family dreams about a time when all day-to-day problems are left behind and to go somewhere for a week or two just to simply spend some time together. We know how important is not to let Inga know that our life must be a little bit different due to her disability. And […]

130 weeks since diagnosis

Last 2 weeks were very exhausting for Inga. Our little princess spent them on physiotherapy camp in Poland. Everyday for 4-5 hours she has been doing different exercises: Bobath, stretching, massage, breath exercises and hippotherapy. Inga realizes how important physiotherapy is for her. In fact, she does not remember live other than the one with […]

129 weeks since diagnosis

August is SMA Awareness Month. You may raise awareness by liking and sharing this post. Doing that you may help children like Inga get an access to SMA treatment that is still not available in UK. Thank to all of you for your help! Some facts about SMA (spinal muscular atrophy): – 1 in 50 […]

128 weeks since diagnosis

Despite her disability Inga is a typical 4-year-old who has its own ideas and desires. Most of us being a child loved to chase after pigeons, didn’t we? Last weekend Inga was also chasing them on Duomo Square using her little wheelchair. We are very proud of her because she has learnt to steer it […]

127 weeks since diagnosis

Time in Milan is marked for Inga and her mum by heat and hospital appointments. To fight the heat girls go to swimming pool. It is also the best physiotherapy for Inga – both physical and mental. With a little help of pumped tube Inga “walks” on pool floor. It gives her a lot of […]

126 weeks since diagnosis

So many weeks gone since diagnosis…. But there are already 9 weeks since start treatment. Instead of watching Inga gets weaker every day now we may have a hope that she gets stronger each day. It is so great to have such a hope! We still do not know if medicine works. Maybe we want […]

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 […]