Julka is 6 months old. She was diagnosed with a terminal condition which is taking her life away piece by piece. It kills slowly - muscle after muscle. Without a treatment it will result in respiratory failure that will stop her heart.
We only have one chance to help her - an extremely expensive gene therapy in the US, which Julka has to undergo before she is 2 years old. The sooner we do this the better. We don't have much time but we believe we will make it before death takes her away from us.
No parent is prepared to cope with fear of losing their beloved child. We are by her bed day and night listening if she' s still breathing. This condition is so extreme that the sickest children die of pneumonia-induced respiratory failure before their second birthday.
We are filled with dread every day, every hour asking ourselves - What if she gets drastically worse? What if we can't get her the help she needs on time?
When Julka was born on July 16, we didn't expect that we would soon hold her in our arms crying and wondering if she will live. The first few weeks of her life we were thinking everything was okay. Little did we know… One day, when changing her nappy, we noticed that she didn't move her legs in the way every newborn does. We immediately went to the hospital and got the diagnosis that pulled the rug from under our feet: Spinal muscular atrophy (SMA) - type 1 (the most severe type).
What does it mean? It is a genetic condition that makes the muscles weaker and causes problems with movement. It's a serious condition that gets worse over time. SMA is a leading genetic cause of death in infants.
Without treatment, every day brings us closer to losing our child. Unlike any other young parents, instead of enjoying time with our beautiful daughter, we focus on ensuring that the ventilator is connected correctly to allow her to breathe. At night we watch her and wonder what's next.
Currently she's getting medicine that only slows down the progression of the condition but will neither stop it nor cure it. The last and only chance for Julka to live is a gene therapy with the medicine in the US. This treatment is designed to produce SMN protein in the motor neuron cells, which preserves valuable muscular function needed for children to survive. Essentially, it will provide her with a new copy of the gene, which she doesn't have, that makes a protein necessary for survival of motor neurons.
The only thing preventing us from helping our daughter is the exorbitant cost of the treatment. Most likely it is the most expensive medicine in the world. It is the only treatment that can stop SMA.
We are aware we don't have much time. We have to act quickly while there is still a chance. We have to fight, to be able to tell her one day that we did all we could for her to live; to be able to tell her that when she was a newborn there were many people with big hearts who looked out for her.
We ask you for your help - for a life for our daughter…
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