Help Orphan Disease

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Hello everyone!

If I'm posting here, it's to reach some people, to tell you about a disease my little sister is living with. She has to pass by a lot of medical treatments, and she doesn't have the money to face it, so she started a funding campaing to be able to go on more experimental treatments, and being able to get some food and pay the appartment bills since she can't work right now and it's a big stress for her. Me and my family don't have the money to pay for the experimental treatments and all the money required for her to be able to get the minimum needed to face everyday exepenses. We're helping as much as we can, but it's not enough.

Also... I improvised a piano song ( http://www.newgrounds.com/audio/listen/680712 ) related to how this story is affecting me personally. This song is about what she has to go trought these days, so if you give any amount on her fundraising, I give you the right to use it anywhere without asking me.

So, it would be greatly appreciated if some of you guys would just put a little effort on it. It would mean a lot for me, and for my little sister too. Here is the link to her GoFundMe page. It's in french so I google translate here the text she put on the fundraiser page for you to know a bit of her history.

Here is the link for the fund raising : https://www.gofundme.com/29bnjxb8

Here is the google translation of the text... I corrected some errors on it, but I also speak french as my first language. So if you see some mistakes on the text, tell me and I'll correct it. Also a BIG THANKS, kisses and hug to any body giving for the cause :


Proteus syndrome, you know? This would be no surprise that the majority of you has absolutely no idea what it is about. This is normal, since it's actually an orphan disease. This can take various forms, depending on the individual who is affected. It remains, despite the time passing by, unpredictable and largely unrecognized.

It was only at the age of 8 years, after numerous medical tests and beign monitored, that a formal diagnosis came. I was suffering from a disease affecting less than 200 people worldwide. Yes ... I had to get THIS number. This syndrome led me to overcome several challenges that few people my age should normally face: laser surgery, orthopedic surgery, physical therapy, rehabilitation, pulmonary embolism, lipomas extraction and a variety of medical tests.

Through all these physical challenges, I also had to deal with a difficult family situation. I then somehow hook in school life to get out of this complicated situation. Thus I began, early twenties, a university course in social work. The resilience that I show allowed me to persevere despite the hard knocks of life. I wanted more than anything to move forward and fulfill myself. I hope that, despite the disease, I would be able to walk like everyone around me. I still did not know at that time how this would be more difficult than I thought it would.

The blow has somehow been given at the end of 2011, when I was diagnosed with non-Hodgkin lymphoma. More simply, it was cancer of the lymph nodes. It was very aggressive. In the process, I was forced to interrupt my studies in order to concentrate solely on my recovery. It is with joy that on June 28, 2012, it was officially announced to me a complete remission, which continues to this day.

Despite all the joy felt at that time, the disease I am suffering kept progressing. In fact, it is a degenerative disease. So organic defects evolves constantly and is getting worse. Whether venous insufficiency, lipomas, or lipohémangiomatose of osteoarthritis, nothing escapes. All this meant that I have to deal with chronic pain, and at various locations in the body. These are caused, among other reasons, by the presence of many masses that tend, over time, to grow and multiply. Since no surgery is possible to remove this pain there is no optimal and sustainable way to get out of this. It affects significantly all of my daily life. In fact, I have trouble sleeping, I have difficulty feeding me and I no longer have the ability to hold a job, even part time.

In addition, I recently had to start feeding me with a gastrostomy, because my body is simply unable to operate for lack of adequate intake of essential nutrients. Living to survive, this is not what a young woman of my age want to aspire. Carelessness normally experienced during early adulthood is not something I had the chance to live, but life projects, I have a head full of it.

In the other hand, so that I can one day hope to achieve my life goals, I will need to pay significant sums of money. Indeed, since it is an orphan disease, the defects are unknown to the medical field and they evolve unpredictably, physicians must be creative. Some "experimental" treatments have been found by them to relieve particular symptoms with which I made several years now. However, several treatments are not reimbursed by any insurance coverage (whether RAMQ or private insurance). It costs several hundred dollars per month, while I only have right to a limited state support. I have to take over 12 different medications on a daily basis, some of which are to be taken several times a day. This mediacation happily allowed me to stay alive and to decrease a minimum all the pain and symptoms that the disease can cause.

In recent months, I found myself more than once in critical condition. Death lurked. I was terrified. I joined violently the great fragility of life. Even if I had the will to live, even if I had persevered to this day, it gave me the belief that I would survive, as I could feel it in the past. The strong young woman that I was, sometimes only in appearance, finally collapsed. I could not go on an absolute autonomous life. I couldn't only rely on myself anymore. I had to open the door to others. That's why today, I have to reach out for help. I need your help and generosity, not for an organization or association as I did in the past, but for me directly. Some of you know this, but for others, know that the illness I suffer takes more and more ground.

Stress has been particularly important and now I can't support the treatments I need all by myself to find a minimum quality of life. The money raised would allow me among others to cover the various regular basis treatments, such as drugs or services of osteopathy and psychology. It would also allow me not to be anxious with the financial aspect of it. A monetary goal has not yet been fixed, but I would like to accumulate a sufficiently high amount to achieve a trip to the United States and France, two countries where are the best experts on the syndrome that I am suffering from. A research project is also underway on the United States side to develop a first treatment to stop the progression of the disease.

Thank you very much for taking the time to read me. Also thank you to those who are willing to contribute and allow me to at least not having to worry so much about expenses needed to meet my basic needs.

Response to Help Orphan Disease 2016-06-16 19:39:21

At 6/16/16 07:31 PM, zornuzkull wrote: Good luck...

Thank you! May all the luck go to my little sister

Response to Help Orphan Disease 2016-06-17 00:25:15

At 6/16/16 07:30 PM, sebastien01 wrote: Hello everyone!

I've never heard of Proteus syndrome before, but it sounds like something really serious. Sadly, I don't own a paypal account or have money to donate since I don't have a job yet, but I wish you and your little sister the best of luck. ;-;

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Response to Help Orphan Disease 2016-06-17 00:57:24

Doesn't your country have healthcare?

"Compassion is the vice of kings: stamp down the wretched & the weak: this is the law of the strong: this is our law and the joy of the world."

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Response to Help Orphan Disease 2016-06-17 18:35:19

At 6/17/16 12:25 AM, Meowberry wrote:
At 6/16/16 07:30 PM, sebastien01 wrote: Hello everyone!
I've never heard of Proteus syndrome before, but it sounds like something really serious. Sadly, I don't own a paypal account or have money to donate since I don't have a job yet, but I wish you and your little sister the best of luck. ;-;

Thank you for your good wishes, Positive words are always welcome.

Response to Help Orphan Disease 2016-06-17 19:34:06

At 6/17/16 11:06 AM, Anarkat wrote:
At 6/17/16 12:57 AM, satanbrain wrote: Doesn't your country have healthcare?
yeah but unfortunately, retardly handsome trudeau doesn't help to cover medication.

Exactly. Fortunately healthcare is covered by our government, if it would not be the case it would probably cost something like 80 000-100 000$ a year in medical expenses. She needs to pay something around 8 000$ in accessory fees and medication every year, which is hard to get when you don't have the capacity to work because of the disease.

And since my sister has this disease at birth, she doesn't have a private insurance to cover these fees, and she can't get one because no insurance company want to cover these expenses at a normal rate. If she actually wants to get one, it would cost much more than what she needs to pay for medication and accessory fees. It's why the fund raising is going on, and it's why I'm trying to advertise this fund raising at some places on the web.

And, even if you can't or don't donate, every encouragement is still appreciated.

Response to Help Orphan Disease 2016-06-20 19:10:32

At 6/17/16 11:15 PM, Anarkat wrote:
At 6/17/16 07:34 PM, sebastien01 wrote: And, even if you can't or don't donate, every encouragement is still appreciated.
I feel you, and your sister. I'm currently fighting leukemia and needed a lot of treatment and I'm getting pretty broke from it. Life is suck. But we gotta get through it. I hope you guys can win this fight. Do not ever give up and keep going. There will always people who care for you. No matter what. Good luck!

Thanks a lot for the good words Anarkat! I hope for you the same thing you wish for us. It's never easy to go trought this kind of situation, you seem to have a great attitude toward it though, and it makes all the difference IMO.

I really appreciate what you do as an artist, I like the way you see the world too, you are this kind of open minded human being able to feel what the world is going trought, the earth needs a lot of people like you. I truly hope you recover from this and get better after the treatments. Cheers, and never give up!