Weʼve raised £1,231 to help our little cousin Alex who suffers from SMA type 1; receiving gene therapy will save his life.
- Sheffield, UK
- Funded on Thursday, 26th December 2019
Don't have time to donate right now?
Alex is our little cousin who was born at the end of June this year (2019) in Poland. He is only 4 months old but already is the bravest little fighter we know. We were all so excited when he was born and for the first three weeks of his life, he seemed to be a perfectly healthy little baby. Alex suffers from a fatal, genetic disease that we had no idea of until he was diagnosed. He has Spinal Muscular Atrophy type 1 which is the most common and the most severe type of SMA. He was diagnosed with SMA when he was only five weeks old. It was around the time, we had just gone to Poland on our yearly summer holidays. Unfortunately, as he was in hospital, we couldn't really spend too much time with him (children below 12 years old are not allowed as visitors in Polish hospitals). We had only a few days together just before we came back to England. And we are not sure when we are going to see him again...
According to the NHS website, most babies with SMA type 1 die during the first few years of life, usually as a result of serious breathing difficulties. Also, Sudden Infant Death Syndrome is currently linked to undiagnosed SMA type 1.
Alex's parents, all our family back in Poland, friends and even strangers are trying to do everything they possibly can to make sure that Alex stays here with us, but we still need more help and support. We would like to raise £20,000 to contribute to the overwhelming amount of 2.5 million dollars (about 2 million pounds) that they are currently raising for gene therapy treatment, only available in the US, which will save Alex's life. The treatment that has been approved in America earlier this year, is only available for children under two years old and the quicker it is received by a patient, the better results are.
Alex is currently receiving Spinraza, the first treatment that may lead to significant improvement in children with this condition. At the moment, it is funded for all patients in Poland who suffer from SMA type 1. Unfortunately, it does not cure it and doesn’t always work the way it is expected to. We don't know if it will work for Alex...what we know is that gene therapy gives the best results, especially in the youngest patients. Gene therapy will give Alex the best chance to live an independent life - something most of us take for granted but our little cousin has to fight for it every single day.
Alex is very fortunate to have parents who will never give up on him and will always make sure he gets what he deserves. Helping others has been the main purpose of their life. Our auntie, Alex's mum, is a resident doctor on Children Oncology Department and our uncle, Alex's dad, is the co-founder of Otwarte Klatki and Open Cages, two non-profit organisations that help farmed animals. With such a busy schedule helping others, they have also always made the time to be there for us.
Now, it's time for us to help them...physically, we can't be there for them but we thought there must be something we can do. We can raise some money here to contribute to their crowdfunding in Poland.
We're doing this for our auntie and uncle but mostly we're doing this for Alex because he deserves all the chances and opportunities WE have. He deserves to be able to play in the playground; he deserves to be able to play basketball with his dad one day; he deserves to go on holidays with his parents; he deserves to live a normal life.
We've got to do everything we can to give him the chance of life, so please open up your hearts and help us.
We don’t have much time so please…help us save baby Alex.
Thank you so much for your support!
Ida, Isla and Mia
Updates appear here
Ewa Jutrzenka started crowdfunding
Leave a message of support
Dec 14, 2019
Hey, Ewa. Keep fighting the good fight! Love to you and the family.
Dec 11, 2019
Dec 6, 2019
Dec 5, 2019
I wish you a long and happy life.
Dec 1, 2019
I hope you reach the target. Sending much love xx
Nov 26, 2019
We keep spreading The news. We hope and pracy for little Alex!
Nov 26, 2019
Tons of wishes for little fighter Alex
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered nonprofit.
The page owner is responsible for the distribution of funds raised.
Great people make things happen
Do you know anyone in need or maybe want to help a local community cause?
Create you own page and donʼt let that cause go unfunded!About Crowdfunding