Dramatic fight for little Filip’s life ! His muscles are dying, but his determination goes on!

When we are telling this story, tears are coming to our eyes… Our little son, one of the twins, has been diagnosed with terminal disease—SMA! Filip’s muscles are dying, along with his vitality! The disease is in progress, and the only chance to stop it is the injection of the most expensive medicine in the world! We are begging you for help—we need to do everything it takes, and pull ourselves together to save our son… 

On 25th August 2020 I gave birth to twins —Filip and Kuba, in the 36th month of pregnancy. The second twin was stronger from the beginning—he received an Apgar score of 10, while Filip got just 5. The boys were rehabilitated, they were developing normally, but it was visible to the naked eye that Kuba was much stronger. He was the first one to sit and crawl. After our boys had their 1st birthday, the difference between them started to be significant. A month later, Kuba was able to stand up and he slowly started to make his first steps. Filip however, was still crawling. 

We were misled by the fact that our sons were premature babies. No one even suspected that there might be something wrong going on with Filip, no one considered a deceitful, ruthless disease developing in his little body…

Week after week we were noticing more and more symptoms—Filip was sitting in an incorrect position, he was slouching, and the difference between the two brothers was getting bigger. The physical therapy and other treatments didn’t help, and we became more and more scared and hopeless! Due to pandemic, the dates of the appointments with specialist doctors were very distant. In June, I tried to make an appointment with the private neurologist, but Filip was 64th on the waiting list… 

When we finally managed to see him, he thoroughly examined our son. He said that he has some suspicions, but Filip had to undergo more tests. On 28th October, he was finally admitted to the hospital. Within two days, he had several doctor's appointments and his genetic material taken for genetic tests. We waited over a week for the test results. 1,5 weeks of fear and hundreds of questions swirling in our heads. 

The results came back on 8th November in the evening… Our son was diagnosed with SMA type 2—spinal muscular atrophy, a very rare genetic disease which destroys muscles responsible for movement, but also speaking, swallowing, and breathing! If not cured, it leads to tragedy…

When we look at our son, we still cannot believe he is terminally ill. His twin brother is developing normally, and we wish the same for Filip. 

Currently, we have been trying to be qualified for a reimbursed medicine, which would slow down the progress of the disease and prevent from losing the present achievements of our son’s condition. We have also been waiting for a consultation with a genetic specialist and SMA tests for the rest of our children - Kuba and his older sister, 6-year-old Oliwia. We hope they are healthy…

The last hope to completely stop SMA for Filip is the gene therapy, which costs over 9 million zlotys. It is the most expensive medicine in the world! We are devastated, but we also believe in a miracle—that thousands of great hearts will come together to help us save our little son. Please join us in this fight, and support our campaign at Siepomaga. Every donation is extremely valuable—it’s a matter of our son’s life!  

The parents

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Update, 10.01.2022:

Update: The fight against SMA continues! Little Filip has less and less time left—please help!  

I never thought it would be that tough… Dear son, for the rest of my life, I will never forget the fear in your eyes and your heartbreaking pain. We will never come to terms with that. Never…

Filip has already received his first injections of a reimbursed medication which slows down the progress of the SMA. He reacts very badly to the medicine being administered  directly to his spinal cord. After each puncture, he must lie down for a couple of hours and must not lift his head. So he screams… 

The first injection was the worst—about 10 hours of constant crying. Filip was sore, tearful, and irritable for the next 2-3 days. He couldn’t recover. From the first day in the hospital, he’s had a difficulty falling asleep. He wakes up screaming. He only falls asleep in our arms. He’s so afraid of those injections…  

The gene therapy we are raising the funds for, and which is supposed to stop the progress of SMA, is injected only once. The doctors say that it guarantees that our son will be able to walk for 100 % ! He should be able to make his first steps within three months from the injection. 

Unfortunately, the disease is in progress, and we don’t know how long that prediction is going to maintain. That’s why we are begging you for further support! The gene therapy can only be administered when a child’s body weight is up to 13.5 kg…

Dear son, we cannot promise you that this nightmare will end up tomorrow, we cannot change the reality, and make the events of the last couple of weeks go away, but we can assure you that we will never give up and we will do anything to be able to pay for the therapy!

We will fight for you! That’s why we are here, and we ask you to support our campaign. That’s the only solution left to save our son…

Filip’s parents