Boženka is a 4 year old with spinal muscular atrophy and plenty of dreams. We have got medals from Olympic Games and World Championships and a great desire to help Božnka. Join us and help us raise funds for Boženka's new wheelchair.
Author: Sportovci Hrdinům
SPORTOVCI HRDINŮM (ATHLETES FOR LITTLE HEROES)
Boženka is a 4-year-old with spinal muscular atrophy and lots of dreams. We have got medals from Olympic Games and World Championships and a great desire to help Boženka. While we can go for a run every morning, stroll in the evening or just lie down after lunch, Boženka can do none of that by herself. She can’t turn over in bed, sit up in a chair by herself or even swallow bigger chunks of food. She is an incredible warrior, much stronger than us. But from time to time, she needs our help.
Join us and together we can help Boženka gain more independence and make her and her family’s life easier.
THE STORY OF BOŽENKA AND HER CONDITION
Boženka has SMA. She was born with a genetic disorder called spinal muscular atrophy (SMA), which severely limits her in even the most common tasks. She can’t eat nor sit up by herself, she doesn’t have enough strength to breathe, she’s constantly dropping things - sometimes even her own head. There always has to be someone nearby to help. Even the most ordinary sickness could be life threatening for her.
The damaged gene, which causes SMA, is found in the genetic code of every fiftieth person on Earth. When two people with this gene have a baby, there is a chance that it will have SMA.
Kids with this kind of genetic disorder usually do not live beyond two years of age. However with the right support, it may be far longer.
WHAT CAN WE DO?
These days there is no other genetic disorder this close to having available cure. However, there is still plenty more to do. We want to start an organisation that could educate doctors, unite families and children with SMA and support them. Help them fight for their rights and pressure the authorities, so we will no longer lag in treatment behind the world. Organisation which will supervise access to the clinical studies or faster approval of treatments. We are ready to do everything we can to help Boženka and many others with SMA to get proper care and support which is vital for them.
WHO ARE WE?
We are a group of friends, professional athletes who understand what a great gift it is to be able to move and do anything we wish to do. And also how easy it is for us and often taken for granted.
Boženka did not have as much luck. Ever since day one she has struggled with many obstacles. We have put together our personal things, clothes from limited Olympic collections and a lot of other gifts we hope you will enjoy. Through selling these and raising money and awareness we will hopefully make Boženka (and not only her) really happy.
WHY ARE WE APPROACHING YOU?
From our careers in sports we know, that two is always better than one and that the best results are achieved with great team effort. We have won plenty of medals, but this fight is far more important. We wouldn’t be able to make it without you.
CO DOSTANETE ZA SVÉ PENÍZE?
Kus z nás, doslova. Loď, na které Vávra Hradilek vyjel stříbro v Londýně. Lyže, na kterých Tomáš Kraus vyhrál světový pohár. Můžete s námi absolvovat tréninky a zažít, co děláme po nich. Získejte foto obrazy a tapety od jednoho z nejtalentovanějších sportovních fotografů. Máme pro vás osobní předměty, které pro nás znamenají hodně, ale v tomto případě mohou znamenat ještě mnohem mnohem víc.
Show us your support by wearing original Sportovci Hrdinům drawstring bag or badge
Badges and drawstring bags are available in an original gold design as well
You will always look cool with our original trucker cap
Our amazing cotton tote bags will take the weight off your and Boženka's shoudlers
Keep calm and your head warm with our knitted beanie
Decorate your home or your office with our action wallpapers, wooden photo prints or portraits from photographer Jan Kasl
Experience modern pentathlon with Jan Kuf a David Svoboda, pumptrack with Eva Samková or paddling with Vávra Hradilek
WHAT ARE WE GOING TO DO WITH ALL YOUR SUPPORT?
Children with SMA are nearly immobile without if not provided an electronic wheelchair – sadly children in the Czech Republic only get access to a wheelchair once they reach the age of 10. For 500 000 CZK we will be able to make Boženka’s and her family’s life easier by buying her a new wheelchair.
We would love to fulfill one of Boženkas dreams. If we raised more than 600 000 CZK, together we would be able to get fly Boženka in a hot air balloon and maybe even a trip to much warmer, germ-free destination over the winter months.
With 750 000 CZK and more, we will co-fund an organisation, that will educate doctors, take care of speedy treatment approvals, build help centres and unite the families of children with SMA.