As It Is Today
Az Alya Arianna suffers from a medical condition known as beta thalassemia. Her body is unable to reproduce enough red blood cells so she requires blood transfusion every 4-6 weeks to combat anaemia. Over the past year we have been going in and out of hospital to ensure her red blood cell count is normal. Over that period the emotional & physical stress endured by Alya is tremendous.
How To Move Forward
Traditionally, thalassemia is known as an incurable medical condition. This is because it is a form of inherited autosomal recessive blood disorder. But after consulting a medical specialist well versed on this subject we were presented with a possibility. It is not 100% assured of success but the long term benefits far outweigh the risk. A bone marrow transplant is a procedure worth doing.
What Will Happen Next
Alya will be admitted into SDMC on 2 March 2015 where she will begin her stay in the NICU for about 2 weeks. If all goes well she will be moved into a normal room for further monitoring and continuation of her medicine cycle. That phase will last for about 6 weeks. From there on, barring any complications, periodical visits to the hospital is required for a further 8 months to ensure she is given the right prescriptions and observation.
What Has Alya Gone Through
Even prior to all that Alya has already gone through several minor procedures in preparation for the transplant proper; blood tests, biopsy, blood & chemical transfusions, cultures, bone marrow harvesting, lifeline catheter installation and others. Everything is centred in supporting her body’s capability in accepting the new cells. Speaking of the new cells, we are truly blessed that the donor of the bone marrow is non other than her eldest sister Az Sheril Shazney. An almost perfect match the doctor said. Shaz will also be admitted into SDMC as part of the bone marrow harvesting procedure albeit a week later. She will have her own set of medicines and tests to contend with. To get where we are today I can assure you the entire family had our blood analysed from laboratories in Malaysia, Singapore and the USA; all in the effort to find out what caused what, how we can go forward and identification of the elusive donor.
Insurance Won't Cover The Medical Expenses
It’s worth noting that throughout all this non of the medical insurance companies which we subscribed to accepted our request for coverage. All the bills have been or will be classed as self pay due to the nature of the medical condition. As you can probably appreciate, the costs to undergo all this is astronomical. It’s tough enough having to go through the emotional roller coaster and physical trauma, being saddled with six figure hospital bills isn’t helping.
The gist of all this is that Alya needs help. She needs your donations to ensure she gets the best care. Think of it as paying forward or being part of something bigger than ourselves or just doing the right thing. You might never know if one day the tables are turned.