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Gregory Viale's Fundraiser:

Helping a Charity to Make a Charity

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BENEFITING:

Gregory Viale

THE STORY:

There is a group on Facebook that I made for my high-school best friend who has miraculously escaped death twice from rare diseases. It started with a few classmates and now has 481 members, which include acquaintances, a few family members, members of the Tzu Chi foundation. Here is the group. : https://www.facebook.com/groups/193964980758759/. Please take a look.

I am starting this Fundraiser in the hopes of making a charity foundation with Martin as the face of the foundation that can help many people like him that have rare diseases and unfortunate luck. This group has helped him tremendously. Many have prayed for him. Members organized prayers at churches and Buddhist temples to pray for him. He is extremely thankful to the people of this group and once he is fully healed, wants to make a difference. I want to create a medium for him to do so. Instead of having a group, imagine what a charity could do for people like him. I truly believe he has a story to tell. The group is small, but hopefully with the funds raised, the charity can be registered, speeches for awareness can be booked, the website can be professionally made, fees for publicizing the cause can be paid for, and some of the funds can go towards Martin’s medical bill—even though I’m sure he would rather leave all the money to the charity foundation.

We have already told the members of the group a change is coming. We don’t want it to be about just Martin anymore, we want it to be for those in need. In essence, we want this group to be the beginning of a chrity, the beginning of a movement, and I truly believe many of these members will do their best to spread the word and do good; however, in order to do so, a charity must be made.

Here is his story and what we have told the members of the group about our plans to make a chance in other people’s lives:

Martin Kuo was a student, classmate, and athlete at Kaohsiung American School in Taiwan from first through tenth grade. Martin continued on from Kaohsiung American School to Sydney, Australia, where he continued his studies before beginning working for Solar Industry, a company involved with selling solar energy panels. His impressive skills and hard work soon established him as the regional manager, and within a year of starting work he was able to buy his first car. This was a significant accomplishment indeed, as Martin was only 20 years old.


Martin was first diagnosed with Steven Johnson Syndrom (SJS), which later exacerbated to Toxic Epidermal Necrolysis (TEN). In short, he has a rare and life-threatening skin condition that is caused from a reaction to pharmaceutical drugs. It all started with Martin feeling ill and going to the doctor, who prescribed him with a normal antibiotic called Amoxyl (of the Penicillin family) He quickly began reacting to the drug. He was in critical condition with an ailment that has a mortality rate of 40-50%, and he lost more than 90% of his skin to this disease. He now has new baby skin that some people would pay dearly to have.

This has been a tough process for Martin and those who love him. He was in and out of the ICU, and constantly poked and tested on. At times Martin has felt more like a lab rat than a man. Moreover, his internal organs were also at risk, especially his liver. Miraculously he survived this part of his tough journey and was able to return to Taiwan to further his treatments. At this point the doctors had also realized he had Hemophagocytic Lymphohistiocytosis ( HLH), an uncommon hematologic disorder which usually manifests itself as a fever, hepatosplenomegaly, lymphadenopathy, jaundice and rash. To skip all this medical jargon, it is a rare disorder of the immune system where the T-cells (the army which fights off diseases) fighting against inflammatory reactions doesn’t stop and continues to eat or attack other blood cells in the bone marrow; this causes a severe drop in body cell count. While Martin probably got this disease soon after TEN, it took doctors a long time to diagnose as this illness is very rare, dangerous, and hard to diagnose as the symptoms vary widely. If untreated, the disease has a 100% mortality rate within the FIRST TWO MONTHS.

At the Taiwan National Hospital, he has met with the top doctors in the field of HLH and Bone Marrow and is currently undergoing chemotherapy, the typical treatment for this type of disease. The chemotherapy uses the drug Etoposide VP-16. Martin is currently very prone to disease and infection due to his immune system being very weak. To complicate things, as many will understand having read this passage, he is allergic to many antibiotics.

Martin is looking a lot better and more positive; however, his battle is far from over. He is on the journey to recover, physically, but has also had a lot of mental amelioration. Martin sees the world in a new light. He is now stronger, more positive, and has a robust willpower. He has a lot of dreams and plans for once he is done with this medical setback. He is already in the process of repenting for what he feels he has done wrong in the past, is changing bad habits, and improving his personality to become a better man.

When Martin was facing death, this group was for every one to pray for him, and he truly needed it. While he still needs prayers, this group is evolving at his request and the requests of those close to him. This group is not just about Martin anymore, it is about learning and helping people that have to undergo the same hardships that he has experienced and is still experiencing. It is about fighting rare diseases and idiopathic disease; “a disease that develops without an apparent or known cause, although it may have a recognizable pattern of signs and symptoms and may be curable”—both quite similar in nature. It is about creating awareness--teaching people that it is important to check your family medical history and see what type of medicine you may be allergic to. It is about creating a community that helps and prays for those in need. And lastly, it will be more. We hope that this group will continue evolving and start a movement

Martin wants to contribute to making the world a better place. He has allowed Australian doctors at Concord hospital and the University of New South Wales to publish and disclose his medical reports—which will likely be in a medical journal as his condition is rare and can teach many doctors and future doctors. He hopes his hardships can benefit people and maybe lead to better treatments. One day when he is out of the troubled waters, he will be able to talk about his story and spread the word. Until then, Martin will be using this group as a medium of communicating his experience—sort of like a living journal.

Thank you for your time and help. We truly appreciate those who believe in us. Once we make it, we will be looking to give back to Crowdrise.

*Lastly, 3000$ of the funds generated will be given back to a fundraiser on Crowdrise who has a rare disease and we will reach out to them and their family and try to help them through their hardships.

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