Gene therapy in Dayton Children's Hospital, air ambulance transport
Ends at: 01 January 2022
Kajtek is such a cheerful child but still so small and defenseless in the uneven battle with his worst enemy- Canavan.
Every day is an anguish since we heard the diagnosis. The happiness of becoming parents didn’t last long for us. At the beginning we were unaware of disease that is killing our little man. And that this disease is going to make our life a living hell. The fear grew as we heard the first single symptoms: muscle spasticity, psychomotor retardation, macrocephaly. Doctors suspected various conditions but nothing suggested that we were going to fight the hardest battle- the one for our little boy’s life.
Having different scenarios in our minds we were aware of the threat but then
10th of February 2020 came and has changed our lives forever. The diagnosis was devastating. Kajetan was diagnosed with Canavan- a gene-linked neurological disorder in which the brain degenerates into spongy tissue riddled with microscopic fluid-filled spaces.
Kajtuś’s childhood has turned into nightmare. He is almost 3-year-old child but the activities which are basic for a child his age are out of his range. He struggles with grabbing things, holding his head up, rotating his body, not to mention crawling. Can you imagine? Our hearts break every time we are forced to say ‘No’ to our little angel, every time we see his tears and suffering. Such things shouldn’t be a part of parenthood, right?
Upcoming days, months, years terrify us. We cannot believe that he could suffer more in the future but what scares us the most is the horrible vision of aid coming too late to save our little warrior’s life but as you can imagine we will do everything to achieve our goal and help him.
However, there is one glimmer of hope- the innovative gene therapy in the USA. Unfortunately, there is one obstacle to overcome- therapy could cost us over 5 million zlotys (around 1 100 000 EUR). This money is equal to our child’s life, his future and stopping Canavan! We are begging you for help!
The total amount of fundraising will be increased by costs of hospital treatment- almost 1 million zlotys (around 220 000 EUR). We are still waiting to receive final financial estimation from Dayton Children's Hospital. You can imagine that this amount sound surreal for us but we believe in people’s kind hearts. With you all we can fight for Kajtus’s life and raise funds for his treatment. Each one of you could be the superhero in our fight and save our angel’s life- just like superheroes do! Each support is a priceless gift!
We believe that hope is not gone, we vigil by our child’s bedside, we wipe the tears and we take action! We need the army of men of goodwill with kind hearts and souls! We believe you can help us save Kajtus from progression of disease. The failure means slow death of our kid and we cannot let that happen. Please, we beg you to help us, especially now when there is finally a chance to win over Canavan. We cannot lay down our arms, not now.