We have now received an estimate from the clinic where Hanna is going to undergo the treatment. The life and health of our baby daughter have been valued at over $2m! Although we were prepared for it, the amount is astonishing...
Her disease does not allow us to fall asleep peacefully, we are constantly watching over Hanna to ensure she is still breathing. Sometimes it's really bad... We don't know how many times we can die, because of fear - we don't count anymore...
We are paralyzed by the thought that the running time reduces our chances of collecting this huge amount. The amount that is the only cure for our daughter.
We ask you as friends and as a family. HELP our beloved daughter!
We urgently need your help! Time is running out at an alarming rate, we are more and more terrified, even desperate! The world has focused on the fight against the deadly virus and we are fighting for the life of our baby daughter who was diagnosed with SMA few months ago.
Unfortunately, SMA will not wait until the pandemic is over. Every day is of great importance in the fight for our daughter! Meanwhile, the collection stands still, our hands are tied, we cannot organize charity events, concerts, bake sales and we have no chance to go out to people and tell them about Hanna. This is why we are asking you for help! In this current situation, we need your support more than ever! We really need some positive energy and an injection of hope. We are aware that the world is changing, but without your help we will not be able to give Hanna a chance for a better life.
If you cannot support our collection now, please be with us in prayer and thoughts and share our appeal. Let as many people as possible know about our Hanna. Your support is our hope!
Hanna's condition can worsen at any time. SMA is an unpredictable disease. We are afraid of the worst... if our daughter does not receive the necessary help before her second birthday, it will be too late for the treatment!
At the beginning of April 2019, in our lives appeared the brightest sun - Hanna, our daughter. It was she who showed us how little we knew about love so far. Her birth changed everything. The first months passed, we got to know each other, we created a new world together. However, signs began to emerge that something was wrong. We tried to ignore these, but there were more and more worrying signals.
For the first months of her life, Hania had no sign of the disease. Until the age of 3 months, when signs occurred: her feet moved less and less, she began to breathe using the abdomen, not lungs, she did not raise her head up, did not turn herself, did not raise her hands up. The minutes spent on her tummy could be counted on the fingers of one hand, because her tearing crying broke our hearts. We couldn't wait, we started looking for help. We come from Wielkopolska in Poland, but we have lived in London for several years. We turned our first dream, a joint holiday, into visiting doctors and seeking help for Hanna. Initially, decreased muscle tone was diagnosed. At that point we thought this was a problem... But we didn't know that the worst was yet to come.
Even at this point, we thought that rehabilitation and proper exercise would be the solution to her illness. We will remember this visit to the hospital; a conversation about the results of genetic testing, facial expressions, and the tone of the doctor who passed to us the news that Hanna has Spinal Muscular Atrophy Type 1.
We could not breath, there were tears in our eyes and in the back of our minds there was only one thought - how to find a way to save our daughter.
Can you imagine a situation where the only form of leisure time for your tiny child is many hours, sometimes painful, of rehabilitation? That instead of a quiet sleep in the company of a favourite cuddle, they fall asleep at the sound of a machine that watches over their breathing, which can stop at any time?
Last Christmas has shown us that the way we have been fighting the disease is just like walking on the edge, feeling like at any point we can fall into the abyss. An ordinary infection led to Hanna losing the ability to breathe on her own. We went to the hospital, we spent 2 weeks in intensive care. At a time where everyone else had been spending their time with families, we were living in fear. Every visit to Hanna's ward caused extreme emotions, because our little one had been laying there connected to lots of tubes, medical devices and drips that kept her alive. The level of fear reached its height, every phone call from the hospital could carry the worst. Minutes, hours, days passing in slow motion determined by a quiet tick, tick, tick... A quiet night interrupted by the cry of despair of a mother fighting for the life of a child.
Available treatment can provide our daughter with a better functioning every day, but it will not stop the development of the disease, it can only slow it down. If we had known about the disease straight after birth, we could have reacted and prevented its development from the onset. At this point, however, we do not have time to speculate... We need to act, engage with all known and unknown who can help us raise funds for an incredibly expensive treatment in the US. The innovative gene therapy costs over 9 million polish zloty, approximately £1.96 million. Financial resources are needed as soon as possible, because to receive the treatment Hanna cannot reach the age of 2. It has to be given before her second birthday.
We will be fighting to the end. The goal seems to be unrealistic, but we believe in the power of good people who will give Hanna health. Without you, we can't even fight the monster that attacked our daughter! For her, treatment in the US is the only chance that our fear for her life will end; and her life can begin to roll away from the doctor's offices, pain and ventilators. That Hanna will be able to fight this one time for independence.
When I sing in the evenings that I will give her a star from heaven, I mean only one thing that I will do everything I can to save her life. Please join this fight, because we won't get a second chance.
⏩ Follow us on Facebook - Moc dla Haneczki @Power_for_Hanna
⏩ There is a way to help Hanna also through auctions at the Auctions for Hanna Laczkowska
⏩ Follow Hanna on Instagram