157 weeks since diagnosis

This week means a lot of effort for Inga, who is taking part in the rehabilitation camp at the Neurorehabilitation Center. A few hours a day, she bravely exercises with many physiotherapists, to keep her muscles in the best condition and stimulate them for greater work. Believing that the drug works on Inga, we realize […]

156 weeks since diagnosis

This week has been marked by thinking about the last three years we have spent fighting against SMA. Our thoughts ran especially to the day of the diagnosis – February 25, 2016 (http://inga-figurka.pl/en/2018/02/16/2-years-since-diagnosis/).   Although so much time has passed, the memory of this day is still very vivid. It causes sadness and sorrow. The […]

3 years since diagnosis

Today around midday there are 3 years passing since diagnosis… So much have changed through this time… So much sadness, tears, nerves, uncertainty, fears of tomorrow… So many self-sacrifices and efforts to change live into better after diagnosis… So much love and happiness we hade to discover once again in our lives… So many e-mails, […]

155 weeks since diagnosis

Sometimes we do not realise how much Inga’s live is influenced by issues related to treatment and hospital appointments. Being in science museum the biggest joy Inga had in “hospital corner” of children’s city. White coat, stethoscope, ambulance and within a moment Inga became professional doctor. She knew all necessary procedures while doing blood test […]

154 weeks since diagnosis

Last week we had a winter visiting our neighbourhood. Although  it wasn’t American  polar vortex but just small frost and snow – it made our life a bit difficult. It is even more difficult for Inga – frozen wheel rails made her fingers very cold, winter jacket limit her hands movement, legs get cold faster […]

153 weeks since diagnosis

Last week Inga and her mum spent one night at hospital – doctors have ordered sleep study. Results would show how much SMA affect Inga’s breath and if there is any need for breath support at night. Inga was plastered with many sensors, which were connected to computer and monitored for 12 hours. Our brave […]

152 weeks since diagnosis

Last week Inga had several hospital appointments related to being in clinical trial. So, among others, she had basic neurological examination, ECG, blood tests, ophthalmological tests and physiotherapy assessment. Inga was very brave during all test. She says she hates blood test, but she hates eye drops most. Although she does not like most of […]

151 weeks since diagnosis

This week Inga has many hospital appointments related to clinical trial she takes part. She is very brave and we will write more about that very soon. As promised last week we would like to show you happy Inga when she was “hiking” in mountains. Christmas trip to North Wales was very joyful for her. […]

150 weeks since diagnosis

Although it is a week already since new year’s party we still think about previous year. From our perspective it was a very good year. In January 2018 we were in Milan doing everything possible to enrol Inga into clinical trial. This “big day” came on 22nd May and since then we could count weeks […]