Cruel fate is giving our son a hard time! HELP!

Bartek has been having health issues since he was born. When he was six weeks old, we learned he had been suffering from a terminal genetic disease - CYSTIC FIBROSIS! Our son requires several inhaled therapies and chest physical therapies a day. Additionally, he must take enzymes with every meal due to pancreatic insufficiency (his body does not digest fats). When Bartek was three years old, we found out he had cerebral palsy, and a couple of years later, the doctors told us he had vision impairment. Despite his struggles, our son is a happy and brave boy! 

On June 5, 2024, Bartek underwent a spine surgery called selective dorsal rhizotomy. We greenlighted it, although it was the most difficult decision in our lives. We knew how much Bartek was determined to fight for recovery, though. The invasive procedure performed under general anesthesia lasted for approximately five hours, but in our minds, it took ages. We were scared that cystic fibrosis would worsen his respiratory symptoms. Fortunately, Bartek survived it!

Selective dorsal rhizotomy involves cutting certain sensory nerve fibers in the posterior roots of spinal nerves to reduce leg spasticity and encourage independent walking. Recently, Bartek's right foot started to rotate inward and downward (which can lead to a deformity called clubfoot). As a result, he's become less active and finds walking painful. Although only 20% of sensory fibers were cut, there were some serious side effects, like leg numbness followed by leg floppiness. 

Bartek had to learn how to move his toes, raise his legs, and hold them upright. Physical therapy was challenging due to hyperesthesia. Bartek became overly sensitive to stimuli - every touch was painful or highly unpleasant. Additionally, when being positioned from sitting to standing, he couldn't place his whole foot on the ground.

Even though the surgery reduced the spasticity, it resulted in floppiness of the deformed foot, making it impossible to stand on it. It turned out he couldn't walk without orthoses! Unfortunately, there was a long wait time for an appointment with an orthopedic workshop, and manufacturing the individual orthoses took several weeks. 

Bartek requires constant and intense rehabilitation. After his first rehabilitation camp, which improved his condition, the orthopedic technicians took measurements for the orthoses, which were ready just in time for the next camp. Despite the progress, our son still needs intense physical therapy to be able to recover and go to school. We must ask you for help due to our increasing expenses! 

Bartek's parents