RSS Feeds: My Great-Nephew is Living with Alpha Thalassemia
I only have one great-nephew (apo in Tagalog) so far and he was diagnosed with alpha thalassemia shortly after birth, about 11 months ago. I'm keenly aware of his medical problems because I paid for the extra time he spent in the hospital (he was premature). His name is Vladimir (I'm not sure of the spelling) and he answers to his full name, Vlad and "blood". The nickname of "Blood" is used simply because most of his young relatives can't pronounce "Vlad" (heck, fish sounds like "pish" when my relatives say it).
What is alpha thalassemia?
Alpha thalassemia is a genetic blood disorder. It's somewhat ironic that Vlad shares his first name with Dracula (Vlad III Dracula, the Impaler, Romania circa 1431-1476), made famous for being a blood sucking vampire by Bram Stoker.
Alpha thalassemia has several levels of severity, requiring various treatments. Vlad required a blood transfusion at three months and is currently only taking folic acid supplements. He appears healthy and doesn't display the symptoms of any but the mildest forms of the disease.
Finding the Right Foods
Vlad's parents can't afford to buy supplements forever, which is how long Vlad will need extra folic acid in his diet. His mother asked me to find out which foods are high in folic acid and which foods are low in iron, because he needs the extra folic acid without the extra iron (which can actually cause more harm).
I'm still checking a list of foods high in folic acid to see if they're also high in iron and most of them are. So far, I've found that only egg yolks aren't on the high iron list.
Another Health Problem
Vlad's left testicle is enlarged and according to his mother, requires an operation costing about 30,000 pesos (or about 645 US dollars at the current foreign currency exchange rate). The operation isn't a high priority quite yet (he's just a year old today), but it still needs to be taken care of as soon as possible because it will be more difficult for him after he gets older, starts running around and creating hate and discontent like most of the kids around here.
I'm sure I'll be footing the bill for the operation unless Vlad's father, Vergilio (we call him Nonoy and again, I'm not sure of the correct spelling for his real name), finds a decent job soon. Nonoy had a good job when Vlad was born, but it was only a temporary contract job. He has a college degree (I paid his tuition), so it's just a matter of time and I'm crossing my fingers he'll be able to pay the bill himself.
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Sorry to hear about Vlad's problems but glad it isn't life threatening. Wishing him good health.
Wow…I hate to see newborns and kids suffer. Its very generous of you to pay for things like you have. Especially college tuition, that will benefit their family for a long time to come.
Thanks for the info about Alpha Thalassemia. Your efforts to help better the lives of your relatives is highly appreciated by them, I'm sure. There's never a better time to get the info out there and share some tips for how to deal with a condition like this. Great job!
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Are there no charity hospitals in the Philippines? You may want to check into this to save money.
Todd Atkins, LCSW
Baton Rouge Counseling
I'm sure there are, but I doubt we could use one.
I've read almost your entire website here and I've read a few others also. I'm an American internet dating a girl there but I'm not as financially set as you are. I only have my savings but no pension. I'm kinda scared because I want to move there but I cannot be an ATM machine to everyone. Even pinching peso, it will be difficult for me in the long haul if I can't get some find of extra income going. My biggest concern is that her friends and family will shame me into giving them what little money I have. If it was just me and her, I think it would be OK. But it is not just me and her as you know. If I marry her then I also marry her family. And they assume that I am Bill Gates and will foot all of there bills? Like you my heart goes out to the less fortunate around me and I want to help. Yet there is the other side that knows that I cannot help all. How do you cope with all of that? You have been so generous and I wish I could do the same. I cannot or I will be broke and in a foreign country. Any words of wisdom would be taken to heart.
Finding a job here that pays well is extremely difficult unless you're hired by an American corporation that is established here. If you have no other source of income, I wouldn't recommend it because Filipinos have priority in any job opening.
Thanks for sharing information about Alpha Thalassemia. At least the condition is not life threatening. I wish him good health. Thanks for this great blog.
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Here is a link to more information about the genetics of Alpha Thalassemia that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Alpha_Thalassemia/28. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA
We have a National Health Service in the UK, and I do not beleive that we have access to a genetic counselor service. How much do these types of service cost if we have to pay for them?
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