From 1:30 p.m., a children’s tournament will take place at the stadium on Spółdzielcza Street, during which it will be possible to financially support this worthy cause. At 4:45 p.m., the first team will be officially thanked and its promotion to the fourth division will be celebrated. The day will conclude with a league match between BKS Bolesławiec and Gryf Gryfów Śląski.
During the sporting events mentioned above, you will be able to buy grilled sausage, homemade cake, hot and cold drinks, and snacks. All proceeds from the sales will be donated to Aleks’s treatment.
We cordially invite everyone and ask for as much support as possible for ChruPek!
The istotne.pl portal is the event’s media patron.
Collection link: siepomaga.pl/chrupek
Learn Aleks’s (ChruPek’s) story
The boy’s father:
Aleks is 7 years old (turning 8 this year, but he was born in December, so 7 is the fair age to give (smile)) and was born with a genetic condition called diastrophic dysplasia (diastrophic dwarfism, approximately 1 in 200,000 people). Besides his short stature, Aleks has shorter bones, degenerative changes in his joints and muscles, feet in a clubfoot position, and fused phalangeal bones... Even before he was born, we were told that he would never walk, and that being able to sit would be a success.
Practically from birth, Aleks was under the care of one of the best orthopedists in Poland (privately), who corrected Aleks’s legs and feet using casts, procedures, and surgeries. Despite what the NFZ team insistently told us, we saw that Aleks had considerable potential to walk in some way. He learned to walk while holding onto furniture. Then he learned to walk with a push walker, and later, thanks to specially made-to-measure corrective shoes (privately), he walked without assistance. After an intensive rehabilitation program in Wrocław, he took his first steps without special footwear.
Aleks underwent his second foot surgery in Vienna (privately), because we learned that a doctor there had already operated on the clubfeet of people with diastrophic dysplasia. Another major step was surgery at the Paley European Institute in Warsaw (privately), where we decided to cut, rotate, and join the femoral bones with special connectors in order to stop the progressing curvature of the spine. The plan was to correct the feet after 1–2 years, when the connectors would be removed. There was not enough money for the foot correction, and fearing that COVID might prevent doctors from the USA from coming, we decided to have the surgery to remove the fixation performed without correcting the feet.
In January this year, Aleks attended a six-week rehabilitation program in Wrocław, and then in Warsaw we had the fixation removed from his femoral bones. Throughout April, Aleks was again at a rehabilitation program. We continue to consult specialists in Poland and abroad about Aleks’s case, gathering as much information as possible so that, if surgery is performed, we can be sure it will not be an experiment conducted on our child at our expense. At present, after several consultations, we know that Aleks’s feet need to be corrected. Failure to intervene in the feet may cause degenerative changes around the pelvis.
Aleks—known artistically as ChruPek—is a wild child with enormous potential for entertainment and play. Always the smallest and the loudest (smile). To keep everyone supporting him informed about his treatment, what the money has been spent on, and the consequences of these decisions, an FB page was created. We do not publish photos or videos of a crying Aleks, Aleks talking about being in pain or being unable to run... We do not want to preserve such moments in his mind or celebrate his disability and pain. We take pride in what he does, showing his passions and his view of the world. Because ChruPek appears in photos and videos with a broad smile, the fundraisers do not progress as dynamically as they might if they were accompanied by material showing pain, suffering, and helplessness. Nevertheless, we believe there is already enough pain, suffering, and helplessness in the world, and one more smile is always worthwhile (smile).
On 24 September 2017, we launched the YouTube channel CHRUPEK TV, a vlog about what Aleks does, not only medically. On 3 May 2022 (we recently celebrated its fourth anniversary), we launched ChruPek TEAM—a wheelchair running team. Over those four years, we took part in dozens of running events, including half-marathons, covering several thousand kilometers and meeting several hundred people. Drawing on our own experience and our desire to share it with others, we created the YouTube channel CHRUPEK TEAM, where we publish videos from races. We hope that, thanks to this, people beginning their running journey will be able to familiarize themselves with race routes. We also hope there will be more people running with strollers and that they will do so safely; that is why we have recently been recording guides on what a stroller should have, where to run, how to run, and so on.