Rawalpindi
Haji Babar Naseer Sheikh is one of the six patients in Pakistan to have been diagnosed with Friedreich’s ataxia, an inherited disease that causes progressive damage to the nervous system, resulting in symptoms ranging from gait disorder to speech problems; it can also lead to heart disease and diabetes.
Although Babar is unable to speak and move frequently is determined to help other patients by raising public awareness about the disease, for which a cure is yet to be discovered.
Up until five years ago, Babar was enjoying a normal life. Having acquired a BSc degree he started supporting his father in his business till such time when he started experiencing neurological disorders and muscular dystrophy that deprived him of the ability to speak and move like a normal person.
Talking to ‘The News,’ Babar said Friedreich’s ataxia usually begins in childhood and leads to impaired muscle coordination that worsens over time. Its symptoms begin between the ages of 5 and 15. The first symptom to appear is usually gait ataxia or imbalanced walk, and then it slowly spreads to other parts of the body.
Babar said he wants to help patients like him by raising public awareness about this disease. To this end, he has established his own NGO ‘Bin Adam Foundation,’ which is solely working for patients of Friedreich’s ataxia. “There are around 15,000 patients of this disease and 8 to 9 in Pakistan,” he added.
Babar said I am planning to start with the name Bin Adam Special Education (BASE) School for special children and for this I have got land from a kind person. “All I need is some financial support to be able to print pamphlets and to start my school,” he added.
Babar has requested the government and philanthropists to support his project to establish school for special children, and has urged other patients of ataxia to come forward and play their role in spreading awareness about the disease.
via http://www.thenews.com.pk/Todays-News-6-252057-Friedreichs-ataxia-patient-striving-to-create