Help for Nina
Nina is an adorable baby with big smile constantly on her face. Her mental capabilities are perfectly normal. She is showing massive interest in the world around her. Nina's cheerfulness is contagious and she is always full of positive energy despite the pain she battles every day. Unfortunatelyshe suffers from metatropic dysplasia, ultra rare genetic disease.
Metatropic dysplasia is a skeletal and neurological disorder characterized by short stature with skeletal abnormalities and hypotonic tone (very weak muscles in whole body). There is only 100 cases of metatropic dysplasia patients recoded in the whole history of medicine, only around 30 living now days. Skeletal problems associated with metatropic dysplasia include abnormal curvature of the spine called kyphoscoliosis. Other skeletal problems are joint deformities called contractures that restrict the movement of joints in the shoulders, elbows, hips and knees. These are very painful symptoms. Nina is 13 months old but unfortunately she is not able to sit, crawl or even roll over.
Apart of her limitations and pain there is one more massive threat. Flattened bones of the spine are causing excessive movement of spinal bones in the neck that can damage the spinal cord. This mean that it is just a matter of time when she will get paralysed.... and die. But there is a hope... Dr William Mackenzie from Nemours Alfred I. duPont Hospital for Children in Willimington USA is the only person that is able to help. Nina needs at least two surgeries for her spine that will prevent the worst. She will then need a long physio. Nina will also need to travel to USA every year to monitor her spine. The total cost of this treatment might exceed $300.000. So as you see there is a chance for her to have a good life but not without financial support.