Let's save Leon!

Update from November the 5th 2020

Very important information. Urgent help for Leo.

Dear Army of Leo!

We just got an update from a professor from the USA! We already know that the drug to help our son is not a single-dose drug. The treatment will be long-term.

We are still waiting for the full cost estimate of the treatment, which can reach even several million zlotys... Now we need you even more than before!

The drug that Leon gets once will have to be administered for the next 36 months. First every day, then every 2 days.

After receiving the first dose, treatment cannot be stopped. It's a fight for Leoś's life!

Thanks to you, we know that we are not alone. We fight for the life of our little Angel and we believe that he will win. You are a miracle that has come our way. It is also a miracle to know about new treatment options. We will do everything to take advantage of this opportunity. Just please, help us, help Leoś...

Parents

Update from 20 October 2020

The fight for Leo’s life is still going on! New information from a hospital in Germany and a challenge from Leo’s dad.

We consult Leon with a professor from the USA who proposed to administer an experimental drug. Procedures are underway: we need to get approval from the ethics committee and find a clinic where the drug can be administered.

We don't stop! Everyday with our son, every hug we can give him gives us hope. Every moment spent with Leoś and his every breath are the most precious gifts for us. We don’t stop believing that we can overcome that dreadful disease. Thank you for being with us.

Leoś just turned 16 months. He shouldn't celebrate it like this, in hospital, in the ring of the fight for life, but we wanted to celebrate it anyway. I invite you to take part in an unusual action - for your health and for the health of Leoś, our beloved son. Join, let the news spread around the world!                                                                                                                        

Darek, dad

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The fight for Leoś's life continues - day after day, hour after hour, minute after minute... If it weren't for our stubbornness, if not for your support, our son would not be here anymore... We do our best to make him stay with us however, his life is slowly dying out. We are desperate, we move heaven and earth and we beg for help...

We are with Leoś 24 hours a day. Doctors are doing their best to improve his condition. Consultations with clinics in Italy and the USA are ongoing. If it turns out that we can go to India for a stem cell transplant, we will be ready. However, we need help all the time, because other treatment options around the world are still being consulted. Saving Leo's life takes a huge amount of money…

We pray every day for our son's condition to improve. Every little thing gives us new hopes and new motivation to fight… Today Leoś smiled and we cried from happiness... We are fighting a terminal disease, we are waiting for a miracle (but we believe that miracles happen). Recent consultations with doctors in the USA gave us new hope!

We cannot give up, we cannot stop now… We have been through so much pain, suffering, so many tears but we will never give up fighting for our son's life. As long as Leoś is breathing, as long as there is hope...

Please spare a moment to read our story and help us save our baby… 

When Leoś was 1 year old he was admitted to hospital. The diagnosis was devastating - SCO2 gene mutation. A fatal infantile mitochondrial disorder. It is characterized by hypertrophic cardiomyopathy, encephalopathy, lactic acidosis, hypotonia, respiratory distress and/or stridor, developmental delay, spasticity or seizures, and decreased extraocular movements. Most children never make it past 1,5 year. It is undescribable what parents feel when they hear such dreaded diagnosis.

Leoś was born after an uneventful pregnancy. He was cyanotic but received  Apgar score of 10 and soon we were discharged  from hospital. Once we got home we became more and more anxious about our son's health. He developed progressive muscular hypotonia. His body became covered with red marks. We visited one doctor after another. Each one's diagnosis was different.hundreds of tests, travelling from clinic to clinic, nobody could tell us what is wrong with our little Angel. To our dismay Leos' health deteriorated very fast.  Rehabilitation didn't help. Then even worse happened - Coronavirus locked us all at home. Not only us, but everyone, including doctors and rehabilitators.

Two days before his first birthday, Leoś was hospitalized. First there was suspicion, then confirmation – a terminal disease, nothing can be done. We are desperated, so far away from our son. Our older daughter Pola said recently: „It’s so sad, Leoś is so tiny and he hasn’t met the world yet. Don’t let him die…”

In the abyss of despair there was a tiny hope. A spark that illuminates the darkness of the disease. We found out about Aduś - a tiny Angel who fought the same monster. Thanks to this, we learned that in Germany they fight for such children - they try to stabilize their condition as long as possible and, most importantly, minimize changes in the brain. The next step is to fly to India for a stem cell transplant and look for clinics and doctors around the world who are looking for help for children like our Leon.

Everything is happening now, we are in the heat of the fight. We can't describe the despair that is in our hearts.  ...but. We must glue our shattered hearts with love for our son, for our family, and fight. We promised Leo that mum and dad would not give up, that we would look for help until  last breath. Medicine is still developing, new drugs are being developed, diseases that were incurable become curable. That is why we believe that we will find hope for life for our son.

We are begging you to be with us in the darkest moment of our lives. That you would not let us lose our faith that this deadly disease will be overcome by him, our brave son. Your help gives us hope...

Patrycja and Darek, Leoś’s parents