Hello! Thank you for taking your time to come here.
(This is me... A drawing of myself anyway.)
My name is Poi Poi Chen. I'm based in Sweden, Stockholm and I'm an artist. I currently work for Mojang AB, on the game "Scrolls" that recently got released as a beta. I guess it's a good thing to introduce myself, as I'm the one who's putting up the funding page. (If it's important to you, more links to what I do and who I am can be found at the bottom.)
But this really isn't about me.
This is about my beloved friend Noelle Crichton, known as Nono.
(Her little drawing of herself! Nono is an artist too, that's how we met.)
Around the end of spring last year, 2012, after having been consumed with work for a while - which I regret, having not been able to talk to my friends much - I'd finally talk to Nono again and heard about her situation. I knew of most of the things that happened to her and before this she had lost her only mother to cancer. In the aftermath of that - with no family around - my friend had been left all on her own and I hadn't known.
Being alone wouldn't have been a problem if she hadn't been sick. We've known each others for 13 years over the net and during her early high school days, about 10 years ago, she was taken out of school entirely because she was physically too ill to handle it at the time. Since we spent a lot of time talking to each others over the years, I was aware that she wasn't healthy.
(We're from different countries, an ocean apart, yet we're closer to each other than most other people are. She was isolated through her illness and I was isolated due to my social anxiety. This way, we spoke a lot and spent a lot of time together, online. I'm better now, she's yet to be.)
Nono had been diagnosed with Chiari malformation and prior to that, had a lot of problems with no apparent reason until the diagnosis. Chiari is a neurological ailment, something you're born with but normally won't notice until later childhood. There are Chiari patients whose lives don't get quite as affected, but for my friend - she couldn't go to school anymore due to the constant pain and other problems that came with it. It got worse, sometimes to the point where she had to crawl during periods of time just to get around.
Lately, the malformation has harmed her neck a few times.
(I'm very worried for Nono...)
Chiari patients have very sensitive necks, as the malformation of the cerebellum is at the lower back of the head, affecting the spinal cord. I'm afraid she's going to hurt herself more if we let this go on without treatment. Chiari patients with symptoms that get worse will require surgery or else they risk crushing their neck or impairing the nervous system and the illness can get fatal in the long run, which really worries me. She was also warned that there could be permanent damage to her neurocognitive abilities and there's a noticeable degradation that could be reversible with treatment.
Most of the days she's very weak too, apart from pain, she has to spend the days just resting. Chiari also causes a lot of brain fog and it makes you unable to think straight, it's very frustrating for her as she doesn't feel like herself when it happens. It's also hard for people to understand what brain fog is as the person with it may still be able to speak clearly. To outsiders, it seems like she has normal cognitive abilities because it affects only certain, yet important parts of it.
Brain fog as described by Wikipedia:
"Clouding of consciousness, also known as brain fog or mental fog, is a term used in conventional medicine denoting an abnormality in the "regulation" of the "overall level" of consciousness that is mild and less severe than a delirium. The sufferer experiences a subjective sensation of mental clouding described as feeling "foggy"
In her case, it's probably a more severe form of brain fog, however.
Apart from that, she's also very sensitive regarding food. She gets food poisoned very easily, her stomach being unable to keep the food down a lot of the time - forcing her to regurgitate what she just ate - it's hard to get any nutrition to keep her body strong. Making her need an extra amount of rest.
It's very important.
(Receiving her text messages on my phone whenever her illness caused something bad to happen made me feel so far away and helpless. Sometimes I'd cry. I sorta am, right now too.)
We need to get Nono medical attention. At first, I thought we could have found her help in Sweden, where I live. But since she isn't a Swedish citizen the procedure is very long and tedious. I've been in touch with "Stockholm Care", which is a coordinator of health care for people coming from abroad to get treatment in Sweden. Stockholm Care said that all examinations and records made of Nono's condition that are any older than 6 months wouldn't be accepted for an evaluation and because of that they would not make any judgement whether or not they could give her the treatment in Sweden.
In the US, her surgery would estimate roughly to 60000 USD but could be more, not including hospital fees. This is because she has no insurance. Medicaid was no help at all, she wasn't eligible for any aid - because over the phone, she didn't seem "sick enough" to them as she told them she could walk around and do simple chores. The investigation ended as soon as it had started and my friend, being worn out from her sickness couldn't find the energy to try and pursue it again. The long and arduous process would start over from scratch too, as she moved between states.
The surgeon she had spoken to at the time when her mother was still alive, when they still had insurance and there was still a possibility for treatment, said that they could operate on her any time she was ready. But then a series of misfortunes happened and the surgery ended up being postponed and is long overdue now.
As I called the office where her surgeon works, it occurred to me that she may need a new evaluation which would cost a lot of money too, but to begin with we're just trying to fund the surgery. I'm going to figure out ways to take care of the rest, for as long as it takes...
Running out of time.
But yeah, for a year, I've been helping out with the economical situation from a distance and my money is running short. It's hard to save anything at all with my own expenses and especially now that I finally found a place for Nono and me to live at, in Stockholm. We're bringing her to Sweden because she would have ended up without a home at the end of August. I will not let that happen.
The place I found is a sublease and with the housing situation over here, that means it's expensive. It's going to consume more than half my salary each month, starting September 1st. Before this, I spent my days on friendly couches, guest beds and other places so it was easier to save a little bit each month... Also, let's just say I've skipped a lot of meals too.
In the end, we really just want her to get her health back and to start her life anew again. Give her the chance to experience college, to learn subjects she's interested in. We want to find new hobbies together and learn new skills together, she was never given the chance. With her situation continuing to grow worse, it's only a matter of time before something bad happens. It's a slow proceeding sickness, but if treated can be reversed and sooner the better, because the further you go with it, the more irreversible damage it causes. I am not willing to let that continue, I could not let it. I love my friend too much and whether or not the funding succeeds, I'll still fight until the bitter end. Hopefully, it'll be a good ending though, of course...
What will the 60 000 USD be used for?
There are two options.
1. The Doctors commission for the surgery. - NOT including Hospital fees. These are two different fees that needs to be paid. This also does not include travel expenses for when I go back to the USA with Nono to support her while she gets her treatment. These fees, I will pay out of my own pocket.
2. All travel expenses to get her a new examination in the USA. CT-scans cost up to 10 000USD. Updating her medical record so it can be sent to Stockholm Care. If done in Sweden, the surgery itself would cost roughly an estimate of 40 000USD instead.
Thank you for taking the time.
- Poi and Nono
(I will update with photographs later and may add a wishlist too!)
(Viktor and Magnus NystrÃ¶m. I tend to draw my friends a lot, this picture is a bit old!)
In all of this, I've had two very special twins with me, being very supportive, cheering us on! Sometimes they'd pitch in economically when I didn't have enough money to help out. Also, like me, they're game developers too, currently working at Paradox as 3D artists. (on titles like Crusader Kings 2, Europa Universalis 4, Magicka etc!)
You can find more information about Chiari here:
Nono's Twitter! <3<3<3
Poi's art portfolio can be found here with links to various places she hangs out at in the profile: http://poipoi.weebly.com/
(word of warning - I'm a very silly, loving and passionate person privately! Also, most of the art here might be around 3-4 years old.)
The twins, Viktor and Magnus NystrÃ¶m has a joint art site, if you're interested!
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