Thursday, November 17, 2011

Hazel's Wish

Wish Upon a Hero is a site that was recommended to me by one of my friends who also has the neuro-immune illness that I and my daughter are contending with. A couple of years ago I contacted Make-A-Wish on behalf of my daughter Hazel, but they never responded. I don't know if my appeal to them just got lost in the pile, or if they made a decision that ME was not sufficiently life-threatening to entitle my child to some comforts and distractions. I do know that people with ME die of complications (much as AIDS patients do) aged 20 years younger than average. Besides those two robbed decades of life, there's the loss of quality of life, meanwhile. Hazel turned 18 without having celebrated one birthday since her 13th well and healthy. Hazel officially became an adult without having enjoyed the normal activities and pursuits of adolescence. Hazel deserves to have a wish granted, so I've turned to Wish Upon a Hero in hopes that kind heroes will see and grant Hazel's wish.

You can take a look at her Wish Upon a Hero appeal here: http://www.wishuponahero.com/wishes/?id=1064713  There's not room enough there to include all the details so I'm adding some information here that I linked to the WUAH appeal. So welcome, anyone coming to my blog for the first time from the WUAH link!

ME is Myalgic Encephalomyelitis, a chronic neuro-immune disease causing damage to our central nervous, circulatory and immune systems, with resulting intense pain and exhaustion and mobility impairment. My whole family of three - myself and two daughters - were all stricken by it in the Spring of 2007, when Hazel was 13. My younger daughter mostly recovered after a couple of years of illness. Hazel and I continued to worsen. No cure is known at this time.

Unable to work, we are on a severely-limited Disability income, below poverty level. We lost our home and half of our belongings. We moved several times in search of a sustainable living situation but everywhere there was either too high a rent to pay or too rural an area with limited access to vital medical and support services. We have finally returned to the county where we had our home prior to becoming ill, and are in a transitional housing program now which will help us find an affordable home within two years.

We still have hopes of becoming well someday as a small percentage of ME patients do, but when we had been ill for over two years, our chances of that diminished. So it has become increasingly important for us to create a sustainable life. We are in the process of applying for power wheel chairs to increase our mobility, we will need to look for and finance a van to transport those chairs, we're pursuing treatments that might at least reduce pain and slow the damage done by the disease, and if I can increase my health a little I might be able to do some work from home again.

Hazel meanwhile plans to complete her high school education and attend college if only at home and online. Beyond Homeschooling, this Bedschooling will require a powerful computer and, since Hazel's areas of talent and interest include music composition and computing, her wish is for components to build a computer that will allow her to compose, record and mix music with her keyboard and synthesizer. (Formerly a violin player, Hazel had to switch to keyboards because of pain.)

Building and maintaining her computer, and creating and sharing music, will not only give Hazel a creative outlet and an educational pursuit, but will also provide her with increased social contacts via the internet with people who share those interests.

The life of a mostly-bedridden 18-year-old can be depressingly isolated and dull. Hazel has so far born the isolation, pain, exhaustion, poverty and uprootedness with heroic acceptance and hopefulness but she really needs something more to go on. She'll be very grateful and make the most of the opportunities opened up by the equipment she's wishing for.

Here's the full wish list with links for internet purchase. If you would seriously like to assist Hazel, thank you very, very much from her grateful mom! And please visit the Wish Upon a Hero link for a way to contribute.
http://www.wishuponahero.com/wishes/?id=1064713

Thankfully yours.

Hazel's Wish List:


In an only vaguely sensible order:
 
ANTI-STATIC WRISTBAND (useful when you don't want to fry your computer)
Model: Belkin Anti-Static  Wristband
Price: $7.34
URL: http://www.amazon.com/Belkin-Anti-Static-Wrist-Adjustable-Grounding/dp/B00004Z5D1/
 
PROCESSOR (braaaaaains)
Model: AMD Phenom II X6 1100T
Price: $189.99
URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16819103913
 
MOTHERBOARD (apparently a single parent)
Model: ASUS Sabertooth 990FX
Price: $189.99
URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16813131736
 
GRAPHICS CARD (for graphics)
Model: SAPPHIRE AMD Radeon HD 6950
Price: $264.99
URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16814102945
 
MEMORY (I keep forgetting things)
Model: G.SKILL F3-12800CL9Q-16GBRL
Price: $89.99
URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16820231315
 
HARD DISK DRIVE (a useful pot to keep things in*)
Model: HITACHI Deskstar 7K1000.D HDS721010DLE630 (0F13180)
Price: $149.99
URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16822145533
                
OPTICAL DISC DRIVE (apparently whoever invented them didn't know how to
spell disk)
Model: SONY BWU-500s
Price: $129.99
URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16827118049
 
CASE (it's a mystery!)
Model: Silverstone RAVEN RV03
Price: $144.00
URL: http://www.amazon.com/Silverstone-Extended-90-Degree-Motherboard-RV03B-W/dp/B004X19B02/
 
POWER SUPPLY (for supplying power)
Model: CORSAIR HX850
Price: $169.99
URL: http://www.newegg.com/Product/Product.aspx?Item=N82E16817139011
 
MONITOR (blackboard monitor Vimes**)
Model:  Viewsonic VX2450WM-LED
Price: $179.99
URL: http://www.amazon.com/Viewsonic-VX2450WM-LED-23-6-Inch-Widescreen-Speakers/dp/B003Y3BJ7S/
 
KEYBOARD (it says silent, but it's really just less loud)
Model: Das Keyboard Ultimate Silent
Price: $135.00
URL: http://www.daskeyboard.com/model-s-ultimate-silent/
 
OPERATING SYSTEM (for being ridiculously overpriced, but necessary)
Model: Windows 7 Home Premium
Price: $177.03
URL: http://www.amazon.com/Microsoft-Windows-7-Home-Premium/dp/B002DHGMK0/
 
MICROPHONE (for calling very small people)
Model: Shure SM57
Price: $99.00
URL: http://www.amazon.com/Shure-SM57-LC-Cardioid-Dynamic-Microphone/dp/B0000AQRST/
 
WINDSCREEN (for screening wind, or possibly winding screens)
Model: Shure A2WS Windscreen
Price: $14.99
URL: http://www.amazon.com/Shure-A2WS-BLK-A2WS-Windscreen-Black/dp/B0002NIP98/
 
MICROPHONE CLIP (for the microphone to sit in)
Model: On Stage MY250 Shure Type Microphone Clip
Price: $4.35
URL: http://www.amazon.com/Stage-MY250-Shure-Type-Microphone/dp/B0002GXPRM/
 
MICROPHONE STAND (for the microphone to stand on)
Model: On Stage DS7200B Adjustable Desk Microphone Stand
Price: $12.99
URL: http://www.amazon.com/Stage-DS7200B-Adjustable-Microphone-Stand/dp/B0002M3OVI/
 
DAW SOFTWARE (for making beautiful music)
Model: Propellerhead Reason
Price: $395.00
URL: http://www.amazon.com/Propellerhead-99-101-0024-Reason-6/dp/B005GSZ39O/
 
POWER STRIP/SURGE PROTECTOR approximately $20
 
I think that's everything.  Total price: $2374.62 (more than I expected, sorry). 
It might also end up needing a few additional cables.   
Everything should come with everything it needs, but included cables are sometimes 
too short.  Won't know for sure until everything arrives.
 
love,
Hazel (for making pointless parenthetical remarks).
 
 
*Winnie the Pooh reference
** Discworld Reference
(Copied verbatim from the list Hazel gave me, complete with silliness, 
because it shows what a sweet humorous spirit she is able to maintain!) 
 
Note: Apologies to those for whom the Wish Upon a Hero link won't work. The information there
is actually less thorough than what's here, but it provides a thermometer to watch our progress
towards funding Hazel's wish. If you would like to contribute, you can do so without going to 
Wish Upon a Hero, by sending your contribution via paypal to: 
 antimatter@QNET(dot)com. 
Thank you! 

5 comments:

  1. Kassy, has Hazel thought of using a Mac for her composing and music? I know that many musicians use a Mac with GarageBand software to compse. Let me know. I can't help with windows stuff but Mac I might.

    --
    Luv -Tink

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  2. Thanks Tink; Hazel had looked into Macs as they do have such a good reputation in arts but she says, "Macs are nice but they're so much more expensive for the same amount of power." Also she figures by building her own Windows system she can have more future ability to repair, replace, improve and expand. Love back!

    ReplyDelete
  3. will be praying that she will be able to build her own computer

    ReplyDelete
  4. Thank you, Keena. If she gets the parts, she can build it.

    ReplyDelete
  5. Update: Hazel has been going through a very dark time, feeling like she scarcely has a life, she has been bedridden for so long. But this wish will give her something to hang on, for. So, good news: she now have $125 in donations amassed, plus she was given the mic stand, windscreen and anti-static wrist band. So that leaves $2213.68 to go. Slow and steady, we will do this.

    ReplyDelete