“What is she like, your Nastia?”
“She is little, thin and full of joy,” it’s the first time that I talk to her Mom Maria, trying to make a picture of her 3-year-old toddler in my mind.
“There was a little one in our hospital recently in grave condition, with oxygen saturation (blood oxygen level) below 70-80% (while the lower limit of normal is 90%),” I came across this post accidentally at one of parents’ forums and that’s how I found out about the adversity. Little Nastia is only 3 years old but her lungs are not capable of normal breathing. Nastia has cystic fibrosis.
“Look what I’ve drawn!.. Is Daddy going with us to the circus tomorrow? And we went for a walk to the park and the swans came right up to us and they picked the grass and I wasn’t afraid of them!.. And Natasha taught me how to say “varrrran”, - the little one is all around her Mom and chirps nonstop.
“She’s always like this. She can only stay quiet when she’s asleep, I think,” says Maria. “But she’s sick all the time, never-ending bronchitises, hospital admissions, as for shortness of breath – I think her body is just used to it, she simply doesn’t know what it is like, to breathe freely, so she doesn’t really zoom in on that, for her wheezing is a norm.”
“Mom! It’s time for an inhalation,” little Nastia interrupts, all businesslike. Inhalations, physical therapy and pills have become her daily routine and she knows she feels better after the treatment…
Cystic fibrosis is a disease which affects the whole body, but first of all lungs and digestive system. The patients suffer from shortness of breath, poor food absorption, thus they don’t gain weight, have deformed sternums (breastbones) and pale skin… There is no known cure yet for CF, however daily treatments and using special equipment significantly improve patient’s well-being and adds years to his/her life.
We bought Nastia oxygen machine that will help to breathe and rescue it from breathlessness, while home trampoline jumps and trampoline exercises help to clear and release the lungs and, of course, add fun. And - years of life ...