She’s in a wheelchair because of two genetic disorders! Only stem cell therapy can stop her tragedy!

Alexandra was healthy when she was born. At least in our and the doctor’s opinion. She finished elementary school, junior high, and high school. Now, as an adult, she requires stem cell therapy in Bangkok, which is the only solution for her! 

Her disease started almost harmlessly. She was 12 when the doctors discovered her scoliosis. They reassured us that it was common in children and most likely resulted from carrying a heavy backpack. She started physical therapy and wore orthopedic corsets. However, not only her spine disorder could not be reduced but started to get worse. It made no sense to us…

On top of that, Alexandra developed a gait disorder. She broke three bones in her foot and ended up having surgery. The doctors calmed us down again, though. They said it frequently happens to children her age.

However, her gait disorder persisted, and she additionally developed balance problems, which caused falling, speech disorders, and intellectual disability. It was terrible! We didn’t know, what was going on with our daughter, so we started to search for the causes.

Despite having consulted different specialists, we did not obtain a diagnosis. The geneticists referred us for tests that detect children’s genetic disorders. Alexandra underwent week-long examinations in 6 genetic clinics! The results varied, but a diagnosis finally arrived—non-hereditary chromosome 16 disorder. It doesn’t have a name, and it is so rare that in Poland, only two people suffer from it, including Alexandra, and only seven in Europe. Currently, the method of treatment and prognosis is still unknown.

One of the professors who treated Ola discovered that she had another genetic disorder - Friedreich’s ataxia. We asked ourselves, how much suffering can our daughter bear? Would the bad news ever end? 

At 18 years old, Ola broke her right hand, which hardly knitted together.  At that time, the doctors diagnosed Ola with bone fragility. They had to perform hip bone grafting because of osteonecrosis. Ola’s hand did not function properly for one year. She had to learn how to hold objects and write. 

Scoliosis reached 56 degrees, and because Ola turned 25, it is already inoperable! Ataxia is progressive. Ola has a speech disorder. She can move only with a walker and make only short distances. Our daughter, who used to be fit, is using a wheelchair now.

A genetic disorder is incurable but can be stopped and reversed. Stem cell therapy in Bangkok is our last resort. Thanks to that treatment, some patients of the same age stopped using a wheelchair! We cannot waste such a great opportunity! 

Even in the worst nightmare, we would not expect such a tragedy to happen to our daughter. Such a lovely, fit girl has been deprived of independence by a deceitful disease. We are begging you for help! We have time until the end of January, and the amount to raise is enormous! Any donation matters!

Thank you in advance for your support.

Jolanta and Andrzej - parents