Unfortunately SMA takes away quite a big part of childhood from Inga. Once other kids play on the playground – Inga do her physiotherapy and exercises. When other kids run she just follow them with her jealous look… Probably everyone of you remember how it was fantastic to jump, jump because you’ve been happy, nonstop […]
Weeks go by. Inga’s disease slowly but surely moves forward. Live goes somewhere in its own direction… But thanks to our friends that direction means more happy, bright and hopeful life for us and for Inga itself. We would like to again thank all our friends and Inga’s supporters. Thanks! Thanks for charity event in […]
Our friends (Lukasz and Szymon) do their last preparations before expedition. They climb Denali – highest mountain in North America. There is only one week left. Keep fingers crossed!!! http://kartkazpodrozy.pl/denali-expedition _________________________________________ Nasie przyjaciele (Łukasz i Szymon) przygotowują się do wyprawy na Denali – najwyższy szczyt Ameryki Północnej. Oto ich najnowszy wpis: _ “Do wylotu na […]
After 69 weeks since Inga was diagnosed with SMA there is finally possibility to but SMA drug in Europe. It’s the best week we have for the last year. The only problem is price… One injection costs 90 000 euro. Inga would need 5 injection in the first year of treatment and 3 in the […]
It was happiest week since diagnosis. Finally it will possible to buy SMA drug in Europe. Nightmare of incurable disease has just finished. On 1st June this year European Commission has approved Spinraza (SMA drug) to use as SMA treatment. We wish we could cure Inga immediately. But until reimbursement process is finished money is […]
Dear friends. Children’s Day 2017 is going to stay in our memory for a long time. We hope forever. And we want to connote that day with a long way there is ahead of us. The way is to treat and cure SMA. We hope it is gonna be happy, sunny, normal way. With some […]
SMA drug approved. Now it’s just a matter of money…
Although Inga’s breathing tests went well we cannot forget about chest and lungs exercises. We discovered that play with dandelion clocks is a great breathing physiotherapy. We think that every of you blow dandelion clock at least once in a lifetime. We’ve never thought that it could be a matter of healt and life for […]