For the last few months Facebook reminds you what happened on this day but few years ago. Yesterday it reminded us about one March afternoon in 2012. On that day w climbed Sleza Mountain with our 4-years-old son Maks. He run all the time around us climbing every little stone and rock. When we climbed summit we had a magnificent view on Sudaety Mts and its highest peak Sniezka. We think Maks made at least 10 000 steps at that day. Now we dream Inga who is almost for years old now will make at least one step in her future life…. We strongly believe that thanks to physiotherapy and upcoming treatment we will be able to make her strong enough to do so. Yesterday with a big effort but with even bigger joy Inga “walked” around a house. The joy was even bigger because of snow – it is like a magic dust that makes children happy 😉
Last week was very important for SMA community in Poland. Advisory Council at Ministry of Health gave positive opinion about Spinraza treatment to be reimbursed in the future. It is only 1st step and still long way to full refund but we are thinking more positive now. Keep fingers crossed.
The same process to make Spinraza treatment available for SMA patients goes in UK. That is why it is so important to raise awareness about SMA. You can easily do it by liking and sharing Inga’s page (www.facebook.com/IngaFIGURKA) and posts we publish there. Thank You in advance for your support and assistance!