Alice is 1 year old. At the age of 6 months she was diagnosed with congenital leg pathology (congenital false joint, pseudarthrosis) and type 1 neurofibromatosis. The limb has the shape of a saber, curved, shortened. The pathology is that the bone is degenerative, has no ability to repair, so when a break occurs, it does not grow, forming a movable false joint, which makes it impossible to lean on the leg, especially walking.
Unfortunately, the break did happen, now Alisa has a huge cast on her entire leg and there is only one way to help – surgical treatment.
The disease is very rare, occurring in 1:250,000 newborns. So, currently, not much experience has been accumulated in the treatment of such conditions. In Ukraine, limb correction is being attempted to be cured, but, unfortunately, there are no positive results. Unfortunately, not all technologies that can ensure a good fusion are available in Ukraine, and without them, children with such a defect are doomed to many operations that bring only a temporary result (if they do), and after several operations, amputation is most often offered.
There are such opportunities abroad. In particular, the clinic that conducts modern treatment of such conditions and achieves bone fusion in 100 percent of cases is not so far away, it is Warsaw, Paley European Institute. They can provide quality treatment with results. But the bill they presented is too big for today’s realities and our family needs help in raising funds. This amount is 88,000 USD. This amount includes the operation and the rehabilitation period.
They are ready to operate Alice in March, because the sooner the intervention is carried out after the break, the better the results.
Thus, our family needs any help. We will be very grateful!
Peace to us all!