URGENT HELP NEEDED! A deadly disease and a huge price to pay for the rescue - gene therapy is needed to enable Franek to live. It costs nearly 10 million PLN! Every day is essential because the disease progresses day by day...
Frank, compared to other SMA children of this age, is in a very bad condition. The disease has already attacked the respiratory and esophageal muscles. For gene therapy to stop its progress, to save the boy's life, it must be implemented as soon as possible! Unfortunately, the price of this is staggering... Desperate parents are begging for help. Please, read Franek's story, his short journey on this Earth, which without treatment will end far too soon... We are fighting for his life! Please help!
Quiet, gentle crying, virtually silent. It is the only way Frank knows how to ask for help and rescue... He does not scream like the other kids, so we are always on full alert. We do not sleep at night because we take turns watching our son sleeping by the cot. Because of his illness, Franek has problems with his breathing and digestive system. His collapsing ribcage forces us to connect him to a respirator for the night. We are so scared...
The symptoms of the disease very visible right away, but we received the diagnosis late. Franek was born on August 6th, at birth his Apgar scale was 10 but a moment later the doctors noticed that he was flaccid and he was deprived of typical reflexes. We were sent to the clinic in Zabrze where many tests were performed. It also turned out that our little son had necrotizing enterocolitis. It often ends in death! We were scared and curing that condition became a priority. The further diagnostics had to be postponed.
We spent the first month in hospital but we could be with Frank only 4 hours a day. 2.5 hours for mom, 1.5 hours for dad. We felt as if someone ripped our heart out and it was an indescribable pain. But the worst was yet to come... There was not a day when I would not cry, actually it happens every day. They say I look like a human shadow. The disease has taken everything from us: the closeness of the child, its smell, the touch of delicate skin, the possibility of cuddling and comforting. It took away the joy and instead it gave us fear and an empty cot in the house..
When the threat to life was reduced, further diagnostics started in the Upper Silesian Children's Health Centre. We quickly became aware that weakened tension is not only a temporary problem. The diagnosis was brutal - spinal muscular atrophy type 1 (SMA1). For us it was a sentence, the death threat... It was a blow to our family. Our older son, Jasiek, is a healthy boy, we never suspected that we carry a defective gene which we would pass on to our child and he would fall ill.
We have learned that a treatment programme which slows down the progress of the disease has recently been available in Poland. However, before Franek took the first dose of the drug, his condition deteriorated dramatically. The disease attacked the respiratory muscles, then those in the esophagus. We do not know what will happen next.
Every day we learn something new, we learn this disease and how to take care of Frank. We are already equipped with medical equipment that saves his life and is essential in his care. Every day we fight for his quality of life, we constantly rehabilitate him and we support his breathing. Our day is subject to rituals that we cannot forget to keep Franek in good shape. Every day we observe that the disease takes his strength away. A simple infection is a deadly threat to him - his body might not be able to cope. We have a lot of support in the family, everyone is in love with Frank. We are forced to see his life fades every day. The pain is indescribable..
Despite the reimbursed treatment in Poland, without which it would be much harder, Franek’s life is as delicate as porcelain. That is why we try to enjoy every moment we spend with him, every gesture he makes, his every smile... It is his smile, this joy of life which gives us strength and hope, despite all the adversities of fate. We love our son the most in the world and we will do everything we can to keep him with us as long as possible, to keep him happy and as fit as possible. Today we know that there is a great chance!
Since spring 2019 the gene therapy has been available in the USA and this therapy completely stops the progress of the disease. All it takes is one dose for life! A single injection with the medicine provides a copy of the damaged SMN1 gene and restores its functions, and as a result it stops the dying of the muscles! Although this is the greatest chance of life, it is beyond our reach. It costs is over 9 million zlotys plus medical care
But we do not lose hope. One boy has already succeeded, thanks to the great help of the Donors! Little Alex got his chance, and we hope that we can achieve it too! We know we have very little time. The medicine must be given until the age of 2 at the most, but the sooner, the greater the chance for the child... We must ask for help, although it is very difficult. But we will do anything for our son. We beg with all our heart, knowing that we may be asking for a miracle. But we have to believe in this miracle, because it means one thing - that our little Frank will be alive...
Basia and Grzegorz Surdel with his family