Our son suffers from the spiral muscular atrophy SMA 1- the most agressive type. His muscles are slowly dying! The only thing that would rescue him is the most expensive medicine in the world. He's one year old child and his time is ticking. From the bottom of our hearts, we ask you to help our child!
Last year-5th July 2019 our miracle, our son Filip came to this world. The pregnancy process was perfect, the birth as well. No complications, 10 Apgar points, we got strong and healthy boy. There were no symptoms of a coming verdict. Until some time...
When our little son was 6 months old, doctors found decreased muscle tone in his body. However, while lying on his stomach, he managed to raise his little head and there was no indication that his condition would be so dramatic...We started physiotherapy. Filip’s condition improved slightly and in January our son started raising his legs, grabbing them with his little hands. But we knew that something was wrong... Our baby wasn’t as active as other children of his age. He was inertly falling through our hands... Rarely rolling over, not to mention about changing his position on the belly.
2020 was supposed to be the worst one. Between January and February Filip’s condition suddenly got worse. He stopped doing all those things he’d been able to do before. Another physiotherapy fell on the worst moment that could be-the beggining of pandemic. All activities were called off... We were exercising with Filip at home on our own, it was the least we could do. Finally we managed to get to neurologist.
He refered us to hospital in order to test our son for SMA. We didn’t believe that our baby could be sick. We were reading about other children with this horrible disease and our son just didn’t fit that description. He was breathing and eating on his own, and even started to flex his legs and rolling over thanks to exercises. Unfortunately...on 17th June we got a call from hospital -Filip was diagnosed with SMA type 1.
Our world turned upside down. It’s been more than a month since we know but still we can’t accept it. We’ve been living a nightmare still hoping to wake up. Knowing that our child suffers from a fatal disease tears us apart every single day. SMA is a disease that destroys neurons responsible for muscles stimulation. Sick person stops moving his legs, arms and then starts having problems with swallowing and breathing...
Sick children with the worst type of this disease -like in Filip's case- die before the end of the second year of life unless they are treated.Every day we see our son waking up and greeting us with a big smile. Filip loves laughing, he’s very contact and cheerful child. But how long will it last? He’s still a baby and he doesn’t udnerstand what happened to him. What happens next? We see how much he is curious about the world. Unfortunately the disease doesn’t let him do anything he wants- he just lies and it breaks our hearts. We don’t want him to be a prisoner in his own body, we can’t let this joy disappear from these beautiful blue eyes.
Filip is being treated with a medicine available in Poland. This medicine slows but doesn't stop the disease process. We're frightened of what may happen next... Filip may stop eating or even breathing on his own! We're scared to death that we'll be forced to watch how our son becomes weaker day by day, how life flees from his body.
Filip's smile, and all the support we get from our family and friends, motivates us to action. At first we were devastated, but now we have to rise up and fight for our son. We still can't believe what happened to us but we need to act! Each day is against us because the disease progresses.
We promised each other to do anything to give Filip a chance...which is gene therapy. This is a single treatment with a madicine which is called the most expensive medicine in the world... It provides a copy of the defective gene, the one Filip doesn't have (and because of that his muscles are dying). It should works for the rest of his life and there's no time left! He needs to get it as soon as it's possible!
Until recently, the medicine was only available in the USA, but now it's given to children in Lublin, Poland. Unfortunately, its cost is sky-high...It's the fight we will never win alone...We'll be able to make it only thanks to thousands of people of magnificent hearts, who are willing to give the gift of life to Filip. We're asking for help, like parents for whom their child is the whole world.
Beata and Adam - Filip's parents
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