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 […]

93 weeks since diagnosis

Weeks since diagnosis go by… Inga fights against SMA doing physiotherapy everyday few times a day. She also use walker with her KAFO splints on – it helps to avoid possible contractures and gives pressure on leg joints. Inga loves to attend her nursery, where she’s met many new friends and learned to sing, cut, […]

91 weeks since diagnosis

We would like to thank you for all your help and support you gave us last year. Because of that Inga was able to do a lot of physiotherapy, she’s attended physiotherapy summer camp, she has been swimming a lot. She has professional orthopaedic equipment e.g. walking frame, manual wheelchair, standing frame etc. Thank all […]

89 weeks since diagnosis

Inga’ dreams… (turn Eng captions in the video below) Sometimes it is really hard to be tough, it’s difficult not to shed a tear. Inga is only 3 years old and has so serious dreams already. Dreams that are simple daily life for other children. Our helplessness is so cruel. What we can do for […]

87 weeks since diagnosis

Inga knows she has weak legs and cannot walk. Because she is still so young and small she does not realize how her disability creats limits in her life. last week she asked when she will go skiing… Our heart has broken again. It is so difficult to tell our own child that there will […]