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June 23, 2010

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June 23, 2010

The WDA has been awesome in term of information, support, and raising awareness for this very common but severely misunderstood disease.

The Great!

I've personally experienced the results of this organization in...

I've been personally lucky enough to benefit from support both with information and with emotional support when I need it. The fundraising they'v done for awareness, research, and recently, the creation of a new cheap OTC med have been amazing efforts.

Ways to make it better...

If I had to make changes to this organization, I would...

Try and create international branches... but for now the money is being put where it needs to go and going international could do much more damage than good.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the fact that I don't have to feel like I'm a hypochondriac or crazy or looking for attention; these people genuinely understand the situation and are striving to remedy it.

The kinds of staff and volunteers that I met were...

Wonderful. They not only keep up the good work they do but they also keep tabs on the people who are part of the society and see how we're all doing whenever they can.

If this organization had 10 million bucks, it could...

Raise the awareness level around the world through the medical system; make medications more available to people... Create support groups wordwide; hold more symposiums and go international.

Ways to make it better...

I have only had one bad experience, and that was when a fellow member found me after reading a post I wrote and started pressing me for very personal medical information, like my cerruloplasm level. He had "intuitively" diagnosed himself and was too nosy.

In my opinion, the biggest challenges facing this organization are...

The lack of awareness about this disease and the fact that it isn't one of the "trendy" diseases out there makes it difficult for them to fundraise or create better awareness.

One thing I'd also say is that...

That I'm glad I found the WDA because now there are a group of people who understand that I'm not looking for attention and I'm not a hypochondriac, and that they also know what it's like to lose certain abilities like how to speak their own language....

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 20, 2010

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June 20, 2010

It was in 1999 when my daughter Vanessa, then 14 years old started to show signs of a liver disease. Her eyes turned yellowish and she started vomiting. I sent her at a nearby government hospital but was rejected. So, I decided to bring her at a private hospital where she was confined for about 10 days. Though the blood tests resulted negative of hepatitis they still indicated at the medical abstract as viral hepatitis. She was blood transfused and later discharged. After a couple of months, she felt weak and had jaundice again.It was then that we started visiting the doctor almost weekly. There was another confinement. She was given Vitamin K shots, aminoleban, prednisone and Vitamin B. In 2000, after several months from here 2 confinements, the more she became weaker. She often had muscle spasm on both legs which pained her the most. Her tummy became big. Her situation worsened when she can't hardly speak anymore. She will just cry and walked like a robot. At one time, I patiently waited her gastroenterologist after clinic hour and asked him about the real condition of my daughter. All he could say was her illness would require long treatment. In July 2000, she acted strange and utter words she never used to say. When we brought her at the hospital she was tied in bed and acted as if she was possessed by an evil spirit. It was about 3 days when she got back to her normal self. After 2 weeks she was again admitted at the hospital this time she lost her vision for 3 days. After a week confinement and a transfusion of white blood platelets she regained her vision and released. It was in September when Vanessa got into a coma for 3 days. Being a single mother, I asked my family's opinion and we decided to bring her to Philippine General Hospital. To my dismay she was denied admission for the reason that the hospital is full. It was my faith that I could hold on that time. Through prayer, the Lord directed me to bring her at the nearest hospital which I thought was Medical Center Manila, a private hospital. There she was admitted and immediately underwent series of lab tests. They asked me who my daughter's doctor was. Acting through faith, I mentioned the name of a doctor once mentioned by my brother.In a little while, the doctor I mentioned, Dra Ibanez, arrived. She told me that the lab tests had a 20/80 chance of survival for Vanessa. That all we could do is pray. At the lobby of the hospital I prayed, "Lord, I know that with You nothing is impossible. Even if there's only 1% of survival for Vanessa I will hold on to it because I believe in YOU." The next day she regained consciousness. But she was almost paralayzed and can't speak. I know God answers prayer. She brought us to Dra Ibanez because she was able to correctly diagnosed her. She said the medicine is not available locally though there's a branch office of the manufacturer of the medicine. I went to the pharma office but said they don"t have even ! bottle stock of the medicine because there's no patient in need of it. Dra Ibanez told me about her patient 10 years ago who may have some stock of the medicine. My brother lost no time and search a remote province to locate the patient. Fortunately, he was able to trace the patient who came from a poor family and gave the first 40 tablet of cuprimine. After a month of confiment she was released again on wheel chair. In December she was able to walk and speak again. With only her big tummy as the only signs left, I thought everything was okey. in March 2001, she felt weak and had constant fever that I had to confine her again. She was released and after a week back to her hospital bed and was released again. March 26, on her check up with Dra Ibanez, she was advised to be confined again. She refused. She said she had enough of the hospitalization and already resigned to her fate. She knew we don't have enough money for confinement. The next day, March 27, from the wee hour of the morning while I continue to wipe her with cold towel to subside her fever we had a heart to heart talk... She left me with her seven last words! One of it is to reach out to other WD patients. A week after she was cremated on April 3 I opened my email and read a message from Mr Philip Sellner, then WDA President directing Ms. Mary Graper to assist me. I extented my gratitude and said their help came a little late. Mary and I had became good friends. Now she is the President of WDA and I was designated as the support contact person here in the Philippines. Through our joint effort and one goal to reach out to WD patients WDA, USA and WDA Philippines had helped out about 30 affected patients, about 20 died and 10 surviving. Inspite of some losts, I know God will continue to sustain our needs through the kindness of WDA. Without them, many lives would had been lost. Now, WDA is the sole hope of all WD patients in the Philippines. God is awesome! God is Good!

Photos

The Great!

I've personally experienced the results of this organization in...

my life. God works amazingly and used WDA, USA to be a valued channel of blessings to the poor WD patients around the world.

Ways to make it better...

If I had to make changes to this organization, I would...

suggest that they be given more sources of fund so they would grow bigger to meet the needs on the growing number of Wilson's Disease patients.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The joint prayers we always had no matter how far our distance was. Whenever there's a threatening problem we always unite in prayer.

The kinds of staff and volunteers that I met were...

The staffs were so helpful and kind

If this organization had 10 million bucks, it could...

Break the hindrances for the awareness of this rare illness, Wilson's Disease.

Ways to make it better...

If more lives had been save as WDA, USA and WD Philippines are now doing.

In my opinion, the biggest challenges facing this organization are...

The generation of the needed fund

One thing I'd also say is that...

I am forever greatful to Wilson's Disease Association for making my daughter's last word to helo other WD patients. Truly, God works amazingly to those who believe.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

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