147 weeks since diagnosis

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 […]

146 weeks since diagnosis

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 […]

145 weeks since diagnosis

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 […]

144 weeks since diagnosis

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 […]

143 weeks since diagnosis

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 […]

142 weeks since diagnosis

Tiredness. Despite the great and happy fact that Inga takes a part in clinical trial for 6 months already, we cannot escape tiredness. Many hospital appointments, traveling, constant day time schedule changes, physiotherapy, family temporary separation etc… Even usually bright Inga has moments of sadness and nostalgy. Yesterday’s all day long travel to Milan took […]

141 weeks since diagnosis

As we’ve already mentioned it was very intense week – Inga took a part in physiotherapy camp in Wroclaw. Every day she was doing many exercises with Mrs. Ewa, Mrs. Dominika and Mrs. Magda. Mr. Greg was doing amazing massages. In the afternoons Inga was riding a horse during hippotherapy. Despite rising tiredness Inga was […]

140 weeks since diagnosis

Since Inga has started clinical trial we hope treatment will let her achieve one day a state of INDEPENDANCE. Last week Inga made another “step” to reach our common goal: she figured out on her own how to sit on her sofa (attached movie). So prosaic activity for all of us – for Inga the […]

139 weeks since diagnosis

Autumn in Milan is so beautiful. Nice weather allows to go for a walk. Inga always asks to take her out of her wheelchair to let her feel ground. So mummy put her on the bench or on the stone step. This time it was a moment when Inga “stand” on her knees saying she […]

138 weeks since diagnosis

The splints, we have written about few week ago, have finally arrived. Inga was waiting for them most because they are like a treasure for her. Besides a fact they are painted with flowers and ladybirds, they give Inga the feeling of walking, they let her see a world form above, they give a sense […]