103 weeks since diagnosis

Yesterday Inga went with her brother on skating rink to see how he skates. She was very excited about that much less we have just watched speed skating in TV during Olympic Games in Korea. Unfortunately her joy has disappeared the moment she spot high fence around ice rink. She looked like she wants to […]

102 weeks since diagnosis

Apart from the fact that Inga is a person who suffers from SMA, she is above all our beloved four-year-old girl, having her dreams, joy, sorrows and ideas. The ideas… Her last week idea was simple: “I want to be a hairdresser”. From that thought she went straight into action – her beautiful curly fringe […]

101 weeks since diagnosis

The last week has passed under the mark of the International Scientific Congress on SMA in Krakow. Almost half a thousand participants, dozens of presentations, poster sessions, meetings with pharmaceutical companies, working dinners and backstairs conversations. Almost all doctors and scientists responsible for develop the treatment of spinal muscular atrophy in the world have appeared […]

100 weeks since diagnosis

It’s been 100 weeks since the diagnosis. 700 days. Days devoted to Inga and its struggle with a terrible disease. The days during which Inga stopped walking, stopped standing by herself, stopped climbing small chairs, stopped crawling with strength and happiness. We were getting weaker slowly every day – only photos and videos from time […]

99 weeks since diagnosis

Today Inga joined great event in Newport: Great Orchestra of Christmas Charity finale – the biggest and most know charity movement in Poland. They help new born babies. They helped Inga once she was born. Now it was a her revenge. She enjoyed event much, donate some coins to collect box and get candyfloss for […]

98 weeks since diagnosis

Time still goes by… Two years ago we have heard for the first time about SMA. We wish we could forget about that but SMA acts and takes Inga’s strength. She cannot stand without equipment anymore. We have noticed recently that she started to struggle with crawling. She crawls slower, unwillingly, she tires easily. She […]

2nd New Year’s Eve since diagnosis

All the best in New Year! May that new 2018 be better, much better than previous! May all your dreams come true, we have only one… Year 2017 was a good year. A year of hope. The first SMA drug has been approved (Spinraza/Nusinersen) – longed-for, hoped-for, looked-for treatment. SMA has stopped to be terminal […]

95 weeks since diagnosis

The day after tomorrow at Warsaw University there will be charity auction for Inga. Everyone is invited. More details at: https://www.facebook.com/events/373137753128882/ Last week Inga took a part in physiotherapy course. She was very brave and was exercising very hard. More info and pictures soon on our website. Christmas are coming. Inga was baking traditional ginger […]

94 weeks since diagnosis

Today we would like to express our gratitude to everyone who help Inga. There are so many of you that it is hard to choose and list everyone. Thanks to everyone who sell items on charity auctions: https://www.facebook.com/groups/570788259751400/ http://charytatywni.allegro.pl/listing… https://www.facebook.com/ajatopiernicze/ We’d like to thank Steve and Wojtek for their photos. They will appear on new […]