Unfortunately, our son’s physical functioning began to deteriorate month by month. We started looking for the cause. After three stays in clinics, countless visits to specialists and numerous tests, on December 29 he was diagnosed with Ehlers-Danlos syndrome, a very rare genetic disease, as well as muscle atrophy (axonal sensorimotor polyneuropathy). Our world collapsed, but we know that we must do everything possible to keep Kuba fit for as long as possible.
Ehlers-Danlos syndrome involves many different conditions, and our son absolutely must remain under the constant care of a vascular surgeon, cardiologist, rheumatologist, ophthalmologist, neurologist and geneticist, as well as a physiotherapist three times a week and many other doctors. All appointments take place privately in Poznań and Wrocław, and specialists in autism are also involved.
We are raising money for daily rehabilitation and a rehabilitation camp, which costs PLN 6,000 and is not reimbursed by the National Health Fund (NFZ).
Please donate 1% to Kuba. We sincerely thank you in advance on his behalf. Every contribution, even the smallest one, will help stop the disease.
