That day has begun as usual. Gosia went to work before 7 am. Later mum came to take care of Inga while Maks is at school and me at work…We knew the results of the SMA genetic test should be ready in mid-February. I decided to call the clinic and see if they were already available. We cared about that because on Wednesday Inga supposed to have an MRI of the spine – doctors suspected mechanical trauma responsible for weak legs. I think it was the 15th attempt of diagnosis – it was a year since we noticed that Inga was late in the motor development and we were trying to figure out what was wrong. Since that moment we have been doing intense physiotherapy hoping that it was a harmless condition that could be eliminated by exercises.
The lady at the clinic confirmed that the test results are already available, but they require medical attention with doctor. She made an appointment for Wednesday. Knowing about the planned MRI study at the hospital, I insisted on sharing results already on Monday – we did not want to unnecessarily examine Inga if the result of the genetic test was positive (which of course we did not believe because Inga can’t have SMA!) So I left my work, I went to the clinic and, with the results of the study in the envelope, we found an office at the Medical Academy where doctor worked usually on Mondays. That’s where I spent 2 hours waiting for the doctor to finish his academic duties – it was the time I’ve been thinking and trying to invent scenarios for a diagnosis. But, of course, hypothetically. Finally the doctor invited me to the office – it was after 1pm already. He took the results out of the envelope, looked at me and immediately announced that the result of the test is positive and my daughter is suffering spinal muscular atrophy (SMA)… Basically I don’t remember what he said further because suddenly hypothetical scenarios in my head had to come true. Surprisingly, I didn’t feel like the world had collapsed. Finally after a year I finally found out what’s going on with my beloved Inga – we can start act against known enemy. The world unfortunately collapsed a few minutes later when I had to make a call to Inga’s mummy – Gosia…
Gosia up to today does not want to mention this day, these moments. I do not wish anyone to convey the information to beloved one which takes away joy of life and gives endless sadness. Not expecting she’d listen to me, I asked her to stay calm, and I’d be there soon. At my work, I immediately felt the support of my friends and associates – I was immediately granted day off and went to Gosia. Her cry and yell, when she got in the car, was the saddest moment that day. The moment I realized the world was falling apart. That life will never be the same again. That you can’t predict anything anymore, cannot plan a happy future, that I probably won’t be able to see a smile on Gosia’s face for a long long time…
The moment when Gosia came home and took her little girl on her hands and Inga felt into her arms was the beginning of our rescue plan for Inga. Although at that moment we had to save her mom from madness and nervous breakdown first… We spent all night on the internet looking for information about SMA. Phone calls to family, friends asking for help and advice.
We owe You – our FRIENDS – so much. At that time the help we experienced allowed us to believe in a better future, gave hope, let us calm down and act.
It’s been two years since you’re with us, when you’re with Inga FIGURKA. Thank you! We’re really looking forward to the day we share news about Inga’s treatment with you. We believe it will be soon – be with us and keep your fingers crossed.
F*CK SMA!!!
PS. Seems like Inga knew today is anniversary because she was veeeeery sad whole morning…
