Helping Joy Survive Thalassemia!

$3,240raised of $18,024 goal
17%

Organizer: Peter Tuinstra Beneficiary: Sujittra Wangmana

Sujittra Wangmana (her nickname is "Joy") is a proud but humble 30 year-young single mother of one. Living in Bangkok, Thailand, Joy was diagnosed when 6 months old with Beta Thalassemia Major - her body does not produce healthy red blood cells that carry oxygen. Monthly blood transfusions since she was a child have kept her alive and relatively healthy but also poisoned her body with a now deadly level of iron.

Through the years Joy's family has scraped together enough money to usually obtain her monthly transfusions on time but has been unable to afford consistent iron chelation treatment which is a vital component to them. While life-giving, each transfusion continues to worsen her severe iron toxicity. Death of Thalassemia patients is most often caused by cardiac complications of iron overload. Death often comes between 17 and 30 years, yet with proper treatment one can live much longer.

With funding from friends Joy currently takes a high daily dose of an oral iron chelator (Thai government made GPO-L-ONE) which has an unfortunate side effect of destroying her white blood cells (the immune system). This problem is compounded due to Joy's spleen having been removed when younger leaving her even more vulnerable to infections. When sick she must stop the oral iron chelator and be confined to the hospital until healthy enough to resume treatment. As a result her iron levels are extremely high at 12,500 ng/ml - whereas a healthy woman should have no more than 160ng/ml. Iron levels less than 2,500 ng/ml are associated with improved survival for Thalassemia patients.

You can help Joy survive Thalassemia by contributing money to ensure she receives proper blood transfusions and is able to immediately tackle her iron toxicity with an additional iron chelator, Desferal, which is the medically preferred chelator but is very expensive. It has a lower incidence of the side effect as her oral medicine and she should be able to maintain use of it when sick unlike her current treatment. The combination of both medicines will have the best effect in the shortest time possible... lower iron levels are within reach!

Joy has insurance through Thailand's basic public health care program where coverage for emergency treatment is available but monthly blood transfusions at a hospital with a Thalassemia specialist along with the medicines her disease requires are not covered. She lives with her Grandmother in Bangkok having access to hospitals that can provide care, while her father travels the south of Thailand operating a small fair looking for hire at temples and public gatherings.  He sends money when he can but it is not consistent nor enough to cover her needs.

Your contribution to help Joy eliminate deadly iron levels and therefore maintain a degree of health will also enable her to continue pursuing her education. Because her childood was spent in and out of the hospital for surgeries and treatment she never completed school. However, Joy is currently studying to get her GED. With the goal of attaining her GED over the next few years Joy hopes to find employment that pays enough to cover her monthly expenses including the cheaper oral medicine GPO-L-ONE (in lower dosage once the extreme iron levels are reduced), and help raise her son with pride and minimal further burden to family, who are already doing their best to support her.

As friends of Joy we plan to help her raise the funds necessary for treatment over the next few years until she can do it on her own. Her doctor estimates it may take up to 4 years to reduce her iron levels to 500 ng/ml, however, we would like to raise money for her 1st year of treatment and allow the doctor to measure Joy's response.

All funds go directly to Joy's bank account and updates on her treatment and condition will happily be shared with all. We hold high hopes that you may share with us the exciting recovery of this loving mother as her iron levels decrease and she pursues education, while continuing to live and provide love for and help raise her son Karim, who was blessed to be born free of his mother's disease.

While we know that today's economy is difficult for many of you and that you have many charitable options for which you manage your thoughtful givings, our hope is for any amount that you can contribute as it will be used responsibly to extend Joy's life.

Your donation will help make Joy's future a reality... your help is so greatly appreciated as she continues to fight for her health and improve life for herself and family!

With many thanks,

Peter Tuinstra
Keith Olson
Emily Reynolds
Wayne Scheller

For individuals residing in Thailand who wish to make a donation, please do so directly to Joy's bank account if more convenient:

Kasikorn Bank
Account Name: Sujittra Wangmana
Account Number: 0952991436




Updates

Updates

10/19/2014
by Peter Tuinstra
Good news all around!  A big thank you to everyone for your contributions so far.  This past Wednesday, 15 October, Joy received her oral iron chelator pills that will last for the coming month. She also received her monthly blood transfusion as scheduled.
The doctor discussed with her the option of taking only 1 bag of blood this month to help limit the accumulation of iron. With only half the usual amount of healthy red blood cells however her body lacks enough oxygen and side effects including headaches, dizziness, and lack of energy among others become more pronocunced.  After discussing the pros and cons, they decided to keep her at 2 bags this month. Joy is making decent progress with the iron chelator pills and so far has not caught a cold or any other illness that would make her have to stop the medicine.
She also passed her exams at school this week!  Joy is very proud to have accomplished this and looks forward to early November when schooling starts up again after a short break.  We want you to know that your donations have played a big part in keeping her healthy and functioning well, enabling her to work towards her GED.  THANK YOU!
We'll be in touch next month :)


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09/18/2014
by Peter Tuinstra
Our beloved donors, yesterday Joy’s iron levels were tested and results are in!  The new count is 11,450; a reduction of about 1,000 ng/dl from 6 months ago when her iron level was 12,500.  
 
Of the 6 months since Joy’s last testing, there was about 1 month where Joy was unable to take the medicine due to complications with her sickness.  If she stays well this time and doesn’t need to stop the medicine again then perhaps we can see a slightly better rate of reduction at her next testing.  The doctor will test every 3 months from now to see how well she progresses.  
Getting under 2,500 ng/dl is vital because statistically the survival rate goes up for Thalassemia patients once they cross that threshold. At the rate of 1,000 ng/dl reduction every 6 months, we are looking at about 4.5 years to get here there.  We still hope to afford adding the injectable iron chelator to her treatment and reduce the iron toxicity as low and soon as is possible.  Joy is extremely grateful for the donations she has received to date and continues to hope that we can reach our funding goal.  Please keep Joy in mind and share her story, we have faith that success is in our hands!  
Thank you to each and every one of you, we’ll be sure to keep you posted with future updates :)

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08/28/2014
by Peter Tuinstra
Dear All,

We'd like to notify that donations to Joy will now be handled through WePay.  PayPal has notified us that it can not process donations for Joy becuase it is "not licensed to process donation payments in all parts of ther world".  

Fortunately Joy has already accessed the funds donated so far, PayPal's policy takes effect from now going forward.  Youcaring has been great in  assisting us to make the switch to WePay however, so there is no interrruption to our fundraising efforts.

Joy continues her studies and is preparing for exams on 21 September.  With her next doctor's appointment on 17 September and preparations for exams she is keeping quite busy.  Every day she takes 12-14 pills of her oral iron chelator which is possible because of your generous donations.  We are making progress!
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08/21/2014
by Peter Tuinstra
First of all a big thank you to all of Joy's supporters... we are nearing double what we had in donations last update on August 10!  The comfort that comes with your help which allows Joy to actually plan how to tackle her problem is a true blessing that means more than you probably know. 

This week Joy recived her monthly 2 bags of blood and 400 pills of the oral iron chelator GPO-L-ONE which will last her a month.  Our ultimate goal is get her on the injectable chelator Desferal as well, but will hold off for now as the pump used to take the medicine is a one-time purchase of about $1,000 (it straps to her body for 12 hours/day and delivers the drug continuously), and the medince itself is expected to cost about $1,000/month.  This requires us to get closer to our fundraising goal before adding Desferal to her treatment, yet the fact that she is getting her blood and taking the oral medicine alone right now is a big step in the right direction.

Unfortunately the doctor did not test Joy's iron level this visit like we expected. Instead tests were done on her kidney and liver functions, which are also affected by iron overload and even the oral medicine to a degree. The iron level test is scheduled for 17 September however, so despite our disappointment in not having that test done this week we look forward to next month and will share the results with you all.  Regarding her tests done this week, no news is presumed to be good news but at the next appointment we will learn more about the implications of the results to be sure.

In the meantime Joy is bogged down with schoolwork which is a wonderful distraction. Joy and her son Karim also celebrated his 7th birthday this month! She thanks you for being so kind and sharing your love.  We will post again to keep you in the know, please share and keep Joy in mind.  Thanks and have a great weekend!
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08/10/2014
by Peter Tuinstra
Thank you so, so much to our lovely supporters! You have helped raise $1,700 already and Joy is over the moon that help has come in from every one of you.  Your generosity makes a world of difference and words can't express thank you enough. Joy's next doctor appointment is August 20th where she'll recieve the next blood transfusion and get her next lot of the oral medicine GPO-L-ONE.  Her current iron levels will also be tested this visit, so we anxiously wait to see the results. Usually the results are given on her following visit a month later, however we will ask to get them as soon as possible and share with you all.    
Thanks again to our supporters and for everyone's well-wishes.  Enoy the rest of your weekend knowing that we are so grateful for you!
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