I WISH for new all-weather wheels for my wheelchair

I am a Boston-area student with Mitochondrial Myopathy - a progressive energy metabolism disorder related to muscular dystrophy. My body cannot properly turn food and oxygen into energy for organ function. The disease affects nearly all my organ systems. As a result of muscle breakdown, I've used a wheelchair for 5 years. I do not view myself as "wheelchair-bound" - my wheelchair gives me back the FREEDOM I lost to this disease.
My Story: www.caringbridge.org/visit/empowerenergy

I am in need of new wheels, tires, and rims and axels for my Colours Wheelchair. My current build does not have all-weather tires, and I need knobby tires since I live on a hill and my current tires leave me sliding out of control, Natural Fit Handrims http://www.3rivers.com/NaturalFitGateWay.phpdue to issues with my hand strength plus my rims blister & cramp my hands making it painful to get around. I need better wheels this time as the public transit has broken spokes in the past tying me down.
Having better wheels for my chair will let me live to my fullest potential, rather than keep me in with rain and snow and affecting my access to doctors and education. If I wait on insurance, I may not get them til mid-winter and I need them ASAP before winter and so I don’t miss more classes.
I'm an environmental science and health major because I want to be part of the CURE rather than a victim of my disease. I'm hoping to work in medical research when I get through school. Just now, I need a little help being able to continue attending class.
I will be buying the wheels from Sportaid.com. I have already configured wheels specific to my chair, medical and terrain needs. I'd be more than happy to receive gift certificates to Sportaid towards them!
Sportaid Quote:
Wheels, Natural Fit Handrims and All-Weather Tires Combined: $1254
Castors: $29
Axels: $65
I'd appreciate any help you could provide - even gift certificates towards them would help SO much! :)

**VERIFIED**


www.sportaid.com/xcart/giftcert.php
www.caringbridge.org/visit/empowerenergy

 

This wish has received $515.00 in donations.

Type: Need
Wisher: empowerenergy
Added: Oct 3, 2009 - 2:14 am
Wish is for: Self
Country: United States
State: Massachusetts
City: Cambridge
Category: Healthcare
Sub Category: Medical device
Views: 1421
Comments: 27
Favorite: 6

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empowerenergy
Has Granted: 3 wishes
Has Been Granted: 1 wish

 

Offers (6)

• 46sko 1 month ago - Accepted!

  I will put $5 into your paypal account.

• Tikitu 1 month ago - Accepted!

  I've added a little to your PayPal account. Transaction ID: 4EF68830UC888504A
  

• olgad 1 month ago - Accepted!

  Just transferred $50 to your paypal account

• PaleBlueDot 1 month ago - Accepted!

  I just sent you $300 via Paypal. Best of luck with getting your new wheels, take care!

• Alf 1 month ago - Accepted!

  I added $100 to your paypal.. Take Care, Alf

• pburkham 1 month ago - Accepted!

  I just put $10.00 into your paypal account. I hope that this will be the beginning of some wheelchair angels!

Comments & Responses

• empowerenergy 3 weeks ago

  @1grandma - I totally know what you mean! The insurance just denied me for a new chair because they didn't want to pay for one part I asked for. now I have to go to a hearing to appeal their decision, so I'm making a Keynote/powerpoint presentation to show them the medical evidence behind why the part is necessary for me as well as photos around my neighborhood and school and why I need it to manage my terrain. It's like a never-ending battle!!! this time I'm going to approach it creatively. if they listen, maybe they will remember my valid arguments before turning the next patient down! :]
  
  Brandi - great to see you here!
  
  

• mitofamily 4 weeks ago

  this is so cool---crystal--this is brandi/sc

• 1grandma 1 month ago

  I remember fighting and fighting for a special needs stroller for my 3 yr old, which MDA paid for! I was so relieved to find out that they would give an allowance for that stuff. Unfortunately, if what you need is more than their allowance you get stuck in the situation you are in. Fighting for the things you need takes a LOT of energy. Right now we live in a trailor and in the back of my head I keep thinking 'What are we going to do when she is bigger and I can't carry her around the house on her bad muscle days' I know I am going to need a larger house to accomodate her wheelchair and other medical necessities when her mito gets worse and I am already dreading the fight to get it all. I admire your courage and persistance and I hope that my daughter has your strength to fight for her rights the way you do when she is older. I pray that a cure is found for this TERRIBLE disease for you and my daughter and the thousands of others suffering from it!

• empowerenergy 1 month ago

  yes! I have heard about David Heim/Wheelchair Recycler. Spaulding Rehab told me about them!
  he does power chairs though and I'm in a manual chair. but I plan to donate the power chair to him when I move (eventually) and can get it replaced since the frame is great, just the electronics are not...
  
  

• ClassicMovieBuff 1 month ago

  Here is another avenue to try also:
  http://news.aol.com/philanthropy/nc/article/wheelchair-recycler-david-heim-helps-fix/716509
  
  Here is the email: wheelchairrecycler@yahoo.com

• Hopingto2BaHerofromTexas 1 month ago

  Sounds like you are a real asset to our country, and I mean that sincerely! Still can't help with $$$, but am really interested in the way you are fighting for wheelchair and housing interests. Wow! Harvard AND Leslie U. I am more than impressed!

• empowerenergy 1 month ago

  I did actually meet with Senator John Kerry's aide this morning with several other local people that use wheelchairs to discuss how to change the system/wheelchair industry to get chairs fixed for everyone in a timely matter as we often wait weeks or months for parts, and to get a new chair can take months on end of fighting insurance. it amazes me at how they just CT Scan and MRI constantly and do other unnecessary tests to prevent a lawsuit but the cost of one of these tests is could buy you a new wheelchair which will last 5 years and benefit you more in the long-run. figures! such is the american health care system.
  
  Kerry's aide seemed genuinely interested in the wheelchair repair issues, and if they can push for policy changes with Medicare and Medicaid on a federal level, I think we'd have a lot less wishes for wheelchair parts, batteries or needs for chair replacement with insurance denials.
  
  it won't help me now but hopefully I can help fight for everyone else. :]

• empowerenergy 1 month ago

  oh, and yes, I do charge as much at school as possible. in the science labs there are outlets built in intended for microscopes and all that fun stuff, but I just bring cellphones, wheelchair chargers etc. I need to charge reggularly anyway cuz batteries won't hold a charge - whether its wheelchair batteries, camera batteries, cell batteries, laptop batteries, AA/AAA's etc if charged at my house. :/
  
  even the police station lets me charge at their station. I don't actually have my power chair now though... its back at the company for it's 11th repair. this time it overheated, nearly catching fire. the first chair did that too. this is my 4th powerchair in a year to break at home - hence my need to want the insurance to give me a manual chair - it would save THEM money really, but I guess I gotta appeal their decision. I'm going to work with the senators/senate presidents office, boston ctr for independent living, and the attorney generals office to fight this.

• empowerenergy 1 month ago

  Hopingto2BaHerofromTexas - They did find a problem with the harmonics in my apt this summer when an engineer was called in, but could not replicate the problem... instead they wired a power cord from down the hall, through the ceiling, duct taped it to the other wall outside my door and ran it 4" into my house... here is a photo: http://i34.tinypic.com/2qaiq11.jpg - that way I have a "safe" outlet to use if I need to plug something in without it getting fried.

• empowerenergy 1 month ago

  (continued)
  
  My senator, my state rep and multiple other senators offices have aides working together on this as it's complex fighting with my current housing for repairs (it started 22 months ago) plus trying to get my housing moved (easier said than done when you need subsized handicap housing), plus dealing with insurance arguing for equipment repairs and replacement. It's breaking respiratory stuff too and I keep going into respiratory acidosis/failure as part of the mitochondrial myopathy and can’t be treated at home. :[
  
  My insurance has spent over $100,000 in damages to medical equipment and hospitalizations as a direct result of equipment failing (respiratory stays so I can be on a vent, in Aug my power chair flipped over 2x leaving me in the hospital 9 days with cardiac complications = $20,000 in bills)...

• empowerenergy 1 month ago

  Then they denied me last week for a new wheelchair because they didn’t want to pay for the suspension ($1400) I asked for. I go to Lesley Univ and take some classes at Harvard and both campuses are surrounded by brick sidewalks (which get bad frost heaves in the winter) plus the statehouse in MA has brick sidewalks surrounding that whole neighborhood. I’m there regularly dealing with people to help resolve the housing issues. it’s scary going downhill on brick and cobblestone sidewalks so noe I have to fight the insurance to get that covered.
  
  I think I currently need $500-ish to get tires, rims, handrims, axels and castors. maybe more if MDA doesn’t come through with their $500. I keep missing school between bad wheels and my heart so thats not too good. I *love* school.

• empowerenergy 1 month ago

  (continued)
  
  In the meantime I’m still waiting on MDA for that money (it could take weeks) and winter is quickly approaching. it going down to 30 degrees tonight, and rain all weekend which I can’t go out in with these tires and I have a weekend class Sat & Sunday. I live on a hill 2+ blocks long which i slide up/down in wet weather since these are indoor/court tires on the chair Iâ€m using (from my friend). I’m trying to get these wheels to then move them over to the new chair to cut the cost of that so my insurance can (hopefully) use the money they *would* spend on wheels towards the suspension.
  
  
  I just haven’t had much time to work on wheel funding since I’m too busy arguing the housing issues... I do have prescriptions for them though. I believe I sent WUAH them when I was verified...
  
  my story: http://www.caringbridge.org/visit/empowerenergy
  

• togetherwer 1 month ago

  There is a man located in Marlboro that has just made the news, Nationally even. He repairs electric Wheel Chairs, and donates thems. You might desire to contact him to see if he is able to help you. Chris Reeves chair got donated to him and he built even more chairs from those parts. He might be a good reference to have in case you ever might need his services..

• apayrollchick 1 month ago

  WOW way to go heroes!! It is the response like this that makes my heart BURST with pride to be apart of such a wonderful group of people.
  :0)
  Anna

• sheriab52 1 month ago

  Good morning, I am also wondering the status of this wish and how much more is needed to grant it completely?