Thursday, May 28, 2009

Ava's need for a Kidwalk system

Yesterday I had said, “What’s left?” regarding Ava’s recovery. One of the big hurdles remaining is ambulation (walking, running). Currently Ava’s core body strength cannot support her to even sit up, but she does have some strength in her legs. Probably not enough to support her body, but enough to kick, and this should be enough to get things going. But how do we translate this into ambulating and exercising her muscles to increase strength so that she can eventually walk on her own?

Christa Santa Rosa Hospital has borrowed a medical device named “KidWalk,” which was developed in part by Stanford University. The device is very much like a wheel chair, but instead of having a chair-like seat, it is more like a forward facing bicycle seat. The seat is set low, at about the level of the wheelchair axles so that a small child’s feet can touch the ground. There is a back-brace/harness system that supports the child’s torso so that they can sit in the chair while their feet are on the ground, without having to support the weight of their body. Their legs can move and they can walk where they want to walk without requiring the strength or coordination that is required to walk without assistance. (I have included a link below so that you can see it in action).

Amazingly, I have been told that there is only one such device in all of south Texas for rehabilitation of children. The one that Ava has used at Christa Santa Rosa was brought as a temporary loaner from the device representative. It is shared between other hospitals in South Texas, and is not always available for Ava.

Psst… This is where the favor comes in…

We are wanting to buy one for Ava’s use during her rehabilitation. The cost? Base unit… about $3000. With all the bells and whistles… about $4000, or so. Detailed information, with pictures and a video demonstration of how this works/looks can be found at http://www.primeengineering.com/pages/products/kidWalk.html.

Once you see the video demonstration, then it does not take much to understand, “yes, this is what I would want for my own child if they were unable to walk on their own.”

The hope and expectation is that our prayer warriors will continue to deliver on Ava’s healing, and she will graduate from needing such a device. The Lopez’s will be donating the KidWalk to Christa Santa Rosa for use with other rehabilitating children, without concern for needing to rely on the instrument companies charity to bring it to the hospital and allow them to use it. This would be good not only for Ava, but many other children and families that are much less fortunate than us.

Kerri Thompson is setting up a separate blog (secondary to obstacles with donating directly from the Caringbridge website) with a link to a PayPal account for Ava. We have explored many options with how to handle this and keep coming up with certain roadblocks. Firstly, establishing a non-profit organization so that your donations could be tax deductible takes time, which takes away from the usable time for Ava’s rehabilitation. Secondly, directing the donations through Christa Santa Rosa also requires time and limits our ability to control the use of the funds for the intended purpose. Thirdly, directing the donations through some other organization may stand in opposition to some of the beliefs of others and again may limit the control of the funds for the intended purpose… getting Ava a KidWalk to assist in her rehabilitation. We should have a link to the blog posted tomorrow.

How much is needed? Only modest amounts, but we don’t want anyone donating money who is not in position to donate money. You all are great people and your interest in Ava’s story and offering prayers and words of encouragement to the Lopez’s is valued beyond measure. These are financially hard times for a lot of people right now. If you are tight for cash, then don’t even consider it… you are loved just the same. If you have a little money to spare, then contributing some of it to this cause will not only help Ava, but it will also help other children just like her in the near future.

What will you do if you come up short? Ava will have her chair (period).

What if there is an excess? Every dime donated will go to better the facilities that have been instrumental in Ava’s recovery. There is no plan to spend money that we don’t have, but suffice it to say that all of the money will be spent so that it will serve the betterment of many other children and families, not just the Lopez Family.

Is the donation tax-deductible? No. Unfortunately, time is important to us and has limited our ability to set up such an organization in a timely enough fashion that would allow the donation to be tax deductible.

Your prayers, acts of kindness, and encouragement have continued to sustain the Lopez family. Thank you again for continuing to be there for this most deserving family and for spreading the word “far and wide.” Keep passing the message along. Ava’s story continues to work in the most amazing ways and in the most unsuspected lives.

Ava, the party waits for you.

fw.

No comments:

Post a Comment