Debra Pakistan /Patients Stories
The precedents which help us differentiate between luxuries and necessities, which help us define “want” and “need” are decided mostly by the conditions of our birth. For those born normally in perfect health can aim for the lofty skies while those born of illness, have to struggle for even the most basic necessities of life and basic comforts. Those with arms would never aspire to hold things, while those without, can only dream of grasping. Those with legs would never notice the earth they press beneath their feet as they walk barefoot on the beach while those in a wheelchair can only have the feeling described to them in words, which offer only a poor substitute to the real feeling. Among these, the hardest thing to have been deprived of would probably be the deprivation of touch, the primary mode of interaction and the basic source of comfort. To be deprived of human touch, even the parents’ touch, when going through excruciating pain and difficulties of the disease is truly unimaginable. This is a story of a girl who fought for her life against the rare genetic disorder, Epidermolysis Bullosa (EB).
Harram was born like any normal child, to a well-educated mother. A beautiful little child who would have to put up with so much for so little of life. EB is such a devil where even slight trauma to the skin can cause pain and blisters to form and unfortunately, she was diagnosed with that malady. Hence, began her own struggle for life and her mother’s best efforts to aid her in any way possible.
Harram saw more of the insides of the hospitals than the inside of her own home. Her mother was constantly on the move with her, taking her to specialists and having her checked regularly so that proper care could be provided to her. Each new symptom, a single new development would prompt her to get on the line with the doctors to figure out what was happening. In this way, her mother herself dug up information on this rare disease and her comprehension of it improved gradually so she could take care of her baby girl in ways she needed to be taken proper care of. Having to travel 1300 km across the country each month for the monthly check up because there was no other hospital or clinic in the country which understood this disease (much less treated it) was a challenge in itself as Harram already had a fragile body and needed special care and protocols while travelling and this too took its toll on the poor baby. Yet she struggled on. She fought for her place in this world and she gave it her all. One can’t even begin to imagine a child suffering so much before even being able to talk properly. A beautiful little girl only being able to cry to express her pain and not being able to even convey where it hurts or how much it hurts, would surely have brought everyone to tears.
Alas, what could one day against the hands of fate which took her away from the world when she was a little over three years old. The last four days of her life were a constant fight for survival. Her lungs suddenly collapsed and she could not be moved in such a condition. She was admitted to a nearby government hospital and was being kept alive on ventilator. To her mother’s great dismay, the staff at the hospital were absolutely clueless about her condition as it was that rare and instead of proper treatment, they were trying trial remedies to help her. Sitting in her daughter’s death bed, her mother asked her if she could just go outside for a while. Her daughter held onto the hem of her shirt and her eyes asked her to stay with her. She stayed with her daughter, as her daughter left to meet her Maker. Her mother, saddened and aggrieved at the loss of her daughter, undertook it as a mission to help others in the same situation. A promise she had made with her daughter each night as she sat by her bed that she would do her utmost to be helpful to others afflicted with this condition.