86 weeks since diagnosis

Recently Inga felt an urge to help us with all home duties. We enjoy that very much but it is a kind of challenge as well. We need to choose work for Inga very carefully. We do not want to give her any duties she wouldn’t be able to do. In her case age is […]

85 weeks since diagnosis

“I am three, three and a half. I’m already high enough! Inga is 3,5 years old already. On one hand we are so happy she grows so fast and gets smarter every day. On the other hand it was much easier to hide her disability when she was younger. Almost all two-years-olds use buggy to […]

84 weeks since diagnosis

We have been waiting for a SMA drug 84 weeks already… At the beginning waiting was a little bit pointless – there was no treatment available then. Now SMA drug exists and waiting become more real. We are separated from treatment only by legalities and money of course. This week Italian government has announced that […]

82 weeks since diagnosis

It is almost autumn but we still look back on summer. It was a very good summer for Inga. She has been swimming more than through her entire life. It was a first time others admired her physical abilities. In a water weak legs, weak muscles are not a problem – no one has noticed […]

81 weeks since diagnosis

Last month Inga had two neurological appointments – in Wroclaw and in Cardiff. Unfortunately – they did not contribute much to Inga’s health. Doctors has just verify SMA progress. Disease progress is much more slower that doctors expected – which is good. We think it is all about constant and systematic physiotherapy. Inga’s legs showed […]

80 weeks since diagnosis

This week Inga started to attend nursery at school. It was a big event for a whole our family, in particular for Inga. She was very excited and proud that she is big enough to attend school same as her brother Max. Afterwords there were big emotions and lots of talking about her adventures at […]

76 week since diagnosis

Last week Inga had an appointment with cardiologist. SMA does not affect heart muscle but we want to make sure everything is fine. Some doctors advice us to treat Inga with Salbutamol – although it is asthma medication it is proved that some SMA patients can benefit from that drug as well (http://www.smasupportuk.org.uk/salbutamol). Appointment hasn’t […]

75 weeks since diagnosis

More and more children are treated with our longed-for SMA drug – Spinraza. Mostly in USA but also in Europe. It’s very touching to see their progress. After 2nd or 3rd dose improvement is clearly visible in most cases. We try to imagine what how that medicine would change Inga condition – maybe she could […]

72 weeks since diagnosis

This week Inga for the first time made the statement about her disability: “Mummy – I do not want to have weak legs.” It is really hard to deal with such a sentence. She’s only 3 years old. We do not talk with her about details of her disease. She just knows that she’s got […]