Please help my sister save her son from this fatal disease. Here are her words :
We would like to introduce you to our elder son, Adeeb. He is a seven year old boy who is usually an active, game-loving kid. Our little innocent son has a grave medical condition. After numerous tests and treatments, we learnt that our son has a very rare genetic disease which is X-linked adrenoleukodystrophy (X-ALD). It occurs 1 in 20,000 people and it affects the nervous system and adrenal glands that is caused by a variation (mutation) in the ABCD1 gene and is inherited in an X-linked chromosome. Sadly, there is no cure for this disease. However, stem cell transplantation may stop the progression of ALD if done when neurological symptoms first appear. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, progressive dementia and turn fatal.
For a child who met all his milestones and seemed to have a typical first few years, Adeeb has a whole different picture today. The symptoms are showing itself more prominent as time goes by and we are extremely worried. The onset of childhood cerebral ALD is usually between ages four and ten years. The prognosis and survival rate is generally poor, particularly if the disease is not correctly diagnosed before significant symptoms develop.
There was no one we knew who had seen something similar when we first started on the diagnostic journey. We tried all kinds of different approaches, but hit a dead end everywhere. No Cure. The doctors have advised to do a bone marrow transplant which will help to stop the spreading of this disease and slowly reduce the symptoms. This alone is costing us 45 Lakhs and we aren’t financially sound to carry on with this operation. As my husband is the donor, he also will be undergoing various procedures and will be prepped weeks before the operation. We were told that doing this as early as possible will reduce complications and might help to save our son.
We would be so grateful if you could help us raise this amount and help us to see our young Adeeb play once again with his little brother. Any small contribution would be appreciated. As our final, humble request, please include us and Adeeb in your prayers, as we believe that it can do miracles. We thank you in advance for all your support, though we do not know who each of you are, it's a great gesture that you have come forward to help us.