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 […]
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. […]
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 […]
Dear all! Happy New Year! We hope you will make some big steps in your life next year. We wait for that smallest one… Thank you for everything!
Dear all – we would like to wish you lovely Christmas full of hope, healh and happiness. It’s first Christmas since diagnosis when we look forward into future with big hope for cure SMA due to treatment Inga got in Milan. We believe drug will give her strength she needs so much. We are so […]
This week there has been a huge announcement for the SMA community in Poland: The Minister of Health has declared that since the beginning of a new year the first world registered drug on SMA (Spinraza) will be reimbursed by national health service. We enjoy the happiness of hundreds of families affected by this disease […]
There are some weekends between those spent in hospitals or physio camps that Inga is at home. We play board games then. Recently Inga was given with “Story Cubes” i we must admit she wins every round. All you need to do is to make up a story based on pictures you find on cubes […]
Today, the 3rd of December, we celebrate International Day of Persons with Disabilities. It was proclaimed by UN in 1992. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. We have never thought before about these issues but […]
This week we would like to thank all of you who donated our fight against SMA. The funds raised we spent mostly on finding and having treatment in Italy. We have bought also new wheelchair and orthopedic equipment. Inga has attended few physiotherapy camps where she was doing lots of exercises and we were learned […]
Last week Inga had many hospital appointments. Because she takes part in clinical trial she must be frequently examined. One of the treatment possible side effect might be sight deterioration – initial examinations with animals showed some problems with eyes. That is why eyes test are so important for Inga. Examination is very complex and […]