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“It brings tears to my eyes to see both my children in this state. The small glimmer of hope that our children will recover soon is waning, and I’m terrified of losing them. My elder son has been suffering since the past 2 years, and now my little one is so weak, bound to the hospital bed in critical condition. We are completely helpless, with nothing left to keep us going. I pray that no child has to ever suffer the way my children are.” - Tamjeet, mother
Waseem and Tamjeet have been living a hellish and distressing reality for the past 2 years. Their two sons are grappling with a dangerous disorder that affects one in 15,000 people called X-linked adrenoleukodystrophy, a genetic condition that mainly affects the nervous system and the adrenal glands by progressively damaging the white matter in the brain and spinal cord. However, the younger child, who is just 15 months old, is in critical condition after an unsuccessful stem cell transplant.
Waseem and Tamjeet's 10-year-old son.These parents live each day with the fear of losing both their children
When their older son was 8 years old, Waseem noticed a sudden curvature in his body structure and wasted no time in seeking a medical consultation. Upon the doctor’s advice, several tests were performed, which resulted in the child’s alarming diagnosis.“In a matter of days, his condition began to worsen. He lost his ability to walk, then all his movements ceased and he couldn’t even sit up or stand. Soon he was no longer able to talk, either. We showed him to so many doctors, and focused all our efforts on his treatment. But yet again, bad news is what awaited us - the doctors told us his condition had completely damaged his body to the point where all he could do was breathe! I’m afraid that this could be the state of my younger son, if his treatment is delayed… I can’t let that happen!” - Waseem
He was tested positive for the same condition as his older brother, days after his birth
Waseem and Tamjeet’s second child was born around the time their 10-year-old son’s condition came to light 2 years ago. The disturbing thought that their newborn could also be a victim of this disorder constantly prodded at Waseem’s mind, and he didn’t hesitate to get the baby tested. However, the results were anything but appeasing, as their worst fears had come true.“I was shattered. For hours on end, I sat down in one corner crying in shock and disbelief. This condition had already claimed one son, I couldn’t let it harm my other son too. I swiftly made arrangements for him to undergo a stem cell transplant as soon as possible, because I had faith that he could pull through this. Then I could rest easy knowing he’s healthy and focus my energy on getting my older child treatment. However, the opposite happened. Within days of the procedure, we learned that the transplant had failed.” - Mohammed Waseem, father
‘We fought with all our might, but now we’re completely spent’
The couple went to great lengths to arrange for treatment when both of their children fell sick. All of Waseem’s personal funds were exhausted while seeking medical care for his 10-year-old son. So when the time came for his toddler’s transplant, he sold all his belongings, everything that held value, and even borrowed from relatives.“I just never imagined that both my children would be fighting for their lives, and I’d be struggling to save them. When we had the strength to fight, we did with all our might.But, now we’re completely spent… yet, I just can’t give up. The doctor said that my 15-month-old can get better with continued treatment, but I can’t afford it. Hence, I am turning to you. I request you all for your support to save my son. I pray that Allah blesses you abundantly.” - Waseem
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Identity of the child is protected in adherence to government guidelines.
