THREE years ago, music superstar Oliver Mtukudzi sang his heart-wrenching classic, Seiko, at a sombre dinner which was meant to raise funds for then five-year-old Natasha Sanyanga, who urgently needed a bone-marrow transplant at Apollos Hospital in India.
BY PHYLLIS MBANJE
As Natasha’s mother, Sylvia, stood there with tears sreaming down her face, an anonymous donor was making the full payment to Apollos Hospital.
Natasha’s return from India was celebrated and a thanksgiving church service was held to mark the event.
It was a good story ending for the family — but not quite.
It seems fate has conspired to have them go through that vicious cycle again after the youngest of the family has also been diagnosed with a rare genetic condition called Fanconi anemia and requires a bone marrow transplant as well.
This procedure cannot be done in Zimbabwe and, once again, the family has been forced to launch yet another appeal for young Nathan.
The doctors have advised that the bone marrow transplant needs to be done in the next two months and Nathan is running out of time.
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This is Nathan’s story recreated by his parents, who imagined what he would say if he could tell it himself.
“I was born on April 9, 2015. I have one mummy, one daddy, one brother and sister. I like to dance, especially if it’s on top of tables, chairs, kitchen surfaces and anything that takes climbing to reach. I like mimicking what people say and I remember everyone’s names which the adults think is very clever.
“I have a condition called Fanconi anemia which is a genetic disorder. Fanconi anemia means that people can have birth defects, that’s why my hands were closed when I was born and the doctor had to open them up. Don’t worry, it didn’t hurt because I went to sleep while they were doing it. Now I can pick up my own fork for eating chips with lots of ketchup and if you wear glasses, I can try them on all by myself. Sometimes people try to help me to pick up things and I really don’t like it.
“My mummy and daddy were told that I wouldn’t need to worry about a bone marrow transplant until I was six or seven, which was about the time my sister had one. Then a few weeks ago, I had an upset tummy. We thought I had eaten too much yummy stuff, but we had it checked just in case.
“The doctor counted my blood (mummy and daddy said you can’t count blood, but that showed them!) and he said it was low. This means that now even though I’m only two years old, I must have a bone marrow transplant. Mummy and daddy said we can’t do it here in Zimbabwe because it’s a very, very special thing. We have to go on a real, actual aeroplane and meet a doctor from another country and it might be a he or a she and they will make me better again!
“Everyone is asking us how we are going to get the money because you need lots and lots and lots of money to do everything very, very soon to make me better. I would give mummy and daddy my piggy bank, but I know they’ll say it’s not quite enough. They already said I shouldn’t worry and they’ve promised me that everything will be alright. Now, they want to say a little something.”
“Nathan’s early diagnosis has come to us as a shock. We were unprepared for the timing in every way and we feel that no matter how much we could have worked and saved, we would not have been able to meet the cost of Nathan’s treatment,” Nathan’s parents Sylvia and Eddie Sanyanga recreated how their son would have put it.
Despite all the changes that are going on with his body, Nathan is a bubbly boy who is blissfully unaware of the implications of his diagnosis.
“Pre-procedure, we need to find a bone marrow donor and Nathan needs to go through procedure checks. The process and his recovery, all being well, will take six months. As mentioned above, none of this treatment can be carried out in Zimbabwe. We have had quotes from India ($45 000 transplant and $15 000 donor), South Africa ($100 000 transplant and $30 000 donor),” they said.
“Other costs include airfare, food and accommodation for six months as a family while we support our child, possibly children (one may be a matching donor), making it $20 000.
“We are overwhelmed with all the above and we are faced with the reality that our little boy’s body may not allow him to be with us much longer if he doesn’t get the help he needs. Please don’t let Nathan’s story end here.”
