Tuesday, April 14, 2009

Talking Points

We are ramping up to begin fundraising for Esra and her power-chair and our accessible mini-van. A campaign, really. Sam has almost wrapped up the paperwork for establishing a Special Needs Trust for Esra. So, I need to come up with some talking points, to get my message out quickly and clearly, so people know what we are asking for.

I need to work on answering the following question to get the funding we need for the SnapDragon Power Chair made by Dragon Mobility in Cambridge, England:

Specifically what helps does she need? Most of the time should be talking about who she is as a person ( likes, dislikes), what she has to overcome and very clearly how this wheelchair will change her life.

Currently, Esra cannot sit, crawl, stand or walk. She is completely dependent on others to move her. She uses a manual wheelchair with great confidence, but cannot access things around her, even if she wheels up close to them. She cannot manuever slanted surfaces or hilly terrain. Curbs and thresholds are nearly impossible to clear.

Despite, her dependence on others to move safely and to interact with her environment, she is happy and friendly. However, she has the cognition of a one-year old even though she just turned three, her spoken and signed language is small and imprecise and she is easily distractable. We believe a chair that can give her elevation to peer eye-level, counter and sink-height, as well as access to the floor will open up her world, improve her cognition and language. Also, having a device that will allow to enter and exit buildings, move along uneven sidewalks and roads (like our driveway on a hill) will give her great confidence in herself and an independent self-image. Ultimately, she will participate more fully and gain valuable experience from actively moving through the experiences of family work, home life, play and friends and school.

Still there are my needs, as my back is losing its ability to bend and lift. With scoliosis and fibromyalgia, the physical demands of caring for Esra are mounting. Having a power chair and a ramp-van will vastly lengthen the life-span of my back, or soon I will not be able to stand or walk. Currently, we have a VW station wagon. It is difficult for me to get in and out of and I have to stoop to put Esra and her baby sister into their car seats. Plus, I must lift her 40 pound manual chair into the back compartment. There is a lot of wear and tear happening to my body. The chair and van will change everything!

******************
As you can see, there is a lot to say. I'm looking for help...even if you are far, far away, I could use some help with getting the word out (and organizing all those words!). Does anyone want to help with brainstorming and, possibly putting together a brand/logo/identity, as well as a blog? Plus, some press releases and posters. Anyone want to volunteer? Please email: peggy6e(at)gmail(dot)com. Thats the number "6" in the first part, not the letter "b". Or if you have my phone number, call me!

3 comments:

chris jenkins said...

i am not good with writing - it is not my strong point - but if there is anyway i can help as far as design or setting up stuff, please let me know.

Aaron said...

Peggy, it was great to see your comment on our blog. Good luck with the fundraiser for Esra. Hope things are going well with your family. It looks like we are moving back to Groton in July--we will have to have a playdate after we get all settled!

Krista said...

We will definately help by way of prayers, if that's okay.