SMA does not wait – it kills! There is the way to save Hania... Help!
Ends at: 20 September 2020
nastał dzień, na który tak bardzo czekaliśmy! 19 listopada Hania otrzymała terapię genową w walce z SMA!
To Wy dokonaliście tego cudu, daliście Hani szansę. Będziemy Wam wdzięczni do końca naszego życia. Wreszcie płaczemy ze szczęścia, a nie ze strachu. Dziękujemy Wam z całego serca. Bez Was terapia genowa nie byłaby możliwa!
We are fighting for a life of a 3-month-old baby! Hania was diagnosed with the most severe form of SMA - fatal and very brutal. Her muscles weaken and atrophy until the ones responsible for breathing finally disappear. Then it will be too late to save her... Please, read the appeal of parents who are fighting for everything:
SMA means death spread over time. For three months now, we've been watching our child slowly die. The disease is stealing more and more, and the only chance to stop it completely is the exorbitantly expensive gene therapy in the United States, which can take place until the age of 2! This fund raising is our only hope - hope for life for Hania.
How do you come to terms with something like that? How to live with the knowledge that the child you're carrying in your arms is terminally ill? When Hania was born in October, we were the happiest people in the world. We were starting a new life - together with our Hania. No one would have thought then that this life would put so many obstacles in our way, cause so much pain, cause so many tears... Days passed, and instead of being more and more active, Hania became languid, listless. She stopped lifting her legs up, she couldn't lift her head, she didn't move her arms - she behaved as if something was slowly paralysing her. Soon we found out what "something" is...
A visit to the doctor and a referral to the hospital. Hania immediately underwent a series of tests, after which our happy so far world fell apart into tiny pieces. We remember that moment - the moment when life around you ceases to exist; the moment when you feel only heartbreaking pain. The moment when we found out that our beloved child is terminally ill... The diagnosis is SMA type 1 – spinal muscular atrophy. Hania suffers from the worst form – infantile onset...
The genetic defect makes the muscles atrophy – first those responsible for movement, then those responsible for breathing, swallowing, heart beating. This way we lose Hania day after day, muscle after muscle... At the end of December our daughter started taking a drug that slows down the progress of the disease. Unfortunately – it does not stop it!
But there is hope for Hania! An innovative method of treating children with SMA1 has appeared in the United States. During gene therapy, the child's genetic code will be changed and the body will start producing protein necessary for the muscles to work. However, the treatment costs an unimaginable amount of money – over PLN 9 million. This is the price for Hania's life! We are currently waiting for a detailed cost estimate.
Unfortunately, apart from the money, time is our opponent – the therapy can be carried out only up to the age of 2. But the sooner we stop the disease, the better! It would be best for Hania to start the therapy right now – while our daughter is still eating and breathing on her own!
We watch over Hania's crib with fear. We see our daughter – calm, vulnerable and... terminally ill. We can't imagine that we could lose her. We are scared. We are so scared...
We would give anything to save Hania! Unfortunately, we are unable to pay a huge price for her life on our own. We believe in a miracle – in thousands of hearts uniting to do it.
We ask you for help, for a miracle, fors life for Hania...