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Fight for life, fight for a miracle ... Only a terribly expensive therapy will save Alex❗️

Alex Jutrzenka
Zbiórka zakończona
9 204 362,12 zł ( 101.78% )
Wsparły 173783 osoby
Goal:

Gene therapy - the only chance to save Alex's life

Fundraising organizer: Fundacja Siepomaga
Alex Jutrzenka, 2 years
Poznań, wielkopolskie
SMA 1
Starts at: 15 October 2019
Ends at: 15 January 2020

Result

We made it! Today Alex received gene therapy at Children's Hospital of Philadelphia! The procedure went smoothly so now we're are going Philly's home to rest a bit after such an emotional day. We need to stay in the US for the next three or four months to check if treatment works the way we and our doctors expect.

Thanks a lot for a huge support in our fight for a better life for Alex. 💖

Alex Jutrzenka




Description

Our son Alex was born with a fatal, rare genetic disease. This changed everything. The initial shock and fear for the life of our baby has changed into a daily struggle to save our precious little boy. Today, we are trying to do everything we possibly can to make sure our only child stays here with us... And that is why we would like to ask for your help.

Gene therapy in the United States is the only chance to save the life of Alex and other children with Spinal Muscular Atrophy type 1. Unfortunately, the cost of it is unbelievably high... We realise that we may be asking for something impossible, but we are full of hope which makes us whisper to our boy every day, "We can do this, darling, you'll be fine...". We've got to believe he will...

Alex Jutrzenka


Alex was born at the end of June this year. He was perfect! We were over the moon. The pregnancy went very smoothly too. I was well, the baby was growing steadily and with every week I could feel his little kicks getting stronger. He got an Apgar score of 10/10 when he was born and for the first three weeks he seemed to be a perfectly healthy baby. Even in our worst nightmares we would have never predicted what we were about to face next...


We have started noticing that every day our strong, little boy had been going weaker and weaker and couldn’t move his arms and legs the way he did before. His crying also became weaker and his breathing deteriorated. We got to hospital just in time. If we had waited any longer, we could have lost him... (Sudden infant death syndrome is currently linked to not diagnosed SMA type 1). The day Alex turned 5 weeks, he was diagnosed with Spinal Muscular Atrophy type 1.

Alex Jutrzenka

We were heartbroken. We couldn't believe this was really happening. Our innocent, precious boy who just came to our world and made it complete, may be taken away from us by this cruel disease... We can't let this happen to him. Fortunately, there are currently a lot of developments in the scientific world regarding SMA treatment. A lot of scientists search for the medication that would save so many children with this condition. Sadly, many of those treatments are extremely expensive and, hence, not accessible for everyone.

Our life will never be the same again. There's no one day passing without me crying. We find it really hard to accept that our baby is so ill because we both carry a change in a gene that may cause SMA in our children. It's hard not to feel guilty, not to wonder what if...

Alex Jutrzenka

Alex is already receiving, the first available treatment that may lead to significant improvement in children with this condition which is currently funded for all patients suffering from SMA type 1. Unfortunately, it does not cure the disease and not always works the way it is expected to. We don't know if it will work for our son... However, we have might have found a solution. Gene therapy is a very effective way to actually prevent the disease from further developing which means Alex would have a chance to live a normal, happy life! It can also be combined with treatment and physical therapy. The only problem is the cost of it...

When I started working as a resident doctor on Children’s Oncology Department in Poznań, my dream was to help the most innocent. I had never thought that very soon I would be fighting for the life of my baby. Today Alex is my whole world, there is no time for anything else...

Every day I try my best to do the physical therapy with Alex, following the instructions of our brilliant physiotherapists. He is still a baby, so exercise between naps and feeds are not easy. He often gets impatient and cries and then I cry with him in frustration and sorrow. But I'm not giving up. I can't. It's all for Alex's good.

Alex Jutrzenka

Of course, I'm tired! I can cope with physical exhaustion but I'm also mentally drained. No future mother would imagine her motherhood like this. I would have never thought that every night my baby's pulse and breathing would have to be monitored with pulse oximeter. Next to his cradle, there is a medical suction pump and a cough assist device... I don't think I'm brave and strong. I actually think the opposite. I've never been so scared in my life. I'm scared for my child, the most precious thing in my life, but we know we have to do everything we can to help our son.


It's not easy to ask for help. It's not easy to open up and talk about something as terrifying as the serious illness of your child. It's not easy to expose your personal life to strangers. However, sometimes there is no other choice. What would you do if you wanted to save your child's life?

We are going to fight till the end. Alex has got parents who will never give up and we will always and make sure he gets what he deserves. We are aware though that we won't be able to do this on our own. Gene therapy, the biggest hope for our boy costs 2.5 million dollars. We've got to do everything we can to give him a chance to live and to fight this devastating disease. Please, open up your hearts and help us. Help us to save Alex. We haven’t got much time...

9 204 362,12 zł ( 101.78% )
Wsparły 173783 osoby
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