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JoeysMother

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Walk On Foundation Inc.
June 19, 2013

My son Joey is a bright, happy 3 yr old little boy with a fondness for Thomas the Train, Matchbox Cars, and VeggieTales. He was also born into this world with Complex I Mitochondrial disorder, a fairly rare disease where the cells in his body cannot function properly. This disease causes Joey to suffer from extreme fatigue, overall muscle weakness, swallowing and chewing difficulties, and chroic dehydration. It also attacks his 'autonomic' nervous system--the part of our bodies that automatically regulates things without any input on our part. In particular, he has no ability to regulate his own body heat (it's like not having a thermostat). In the winter, his muscles "seize up" and cause him pain if he gets too cold. And in the summer, even in mildly warm weather, his body will just continue to overheat and he is at constant risk of heat stroke. The winter months were fairly easy to navigate--warm thick clothes for outdoor play, turn the heater up and pile on blankets if things get to0 cold inside. But the warmer months offered weeks where Joey would need to be in our home, with the air-conditioning blasting 24/7, unable to go outside or even ride in the car or do errands, as the sun beating down or high humidity would cause him to overheat, even in an air-conditioned car.

Our son's Geneticist recommended a cooling vest for Joey--a life-saving device that, once activated, would constantly keep Joey cool in the summer, enough where he would be able to enjoy the outdoors and be like a "normal kid" for awhile. She even recommended a "cooling blanket," which acts in much of the same way, that can be draped over Joey in car rides and at night, to further help keep him cool. The particular brand and model she recommended were out of our budget, however, and the insurance did not classify them as a form of Medical Equipment that they would reimburse.

A simple Google Search brought up the "Walk on Foundation," and after a quick emaii to their staff, inquiring if our particular need was something they would consider, I received a prompt response to fill out an application, and attach some form of documentation that verifies the disease he had, and they would address it in their next meeting. Within 48 hours I had received an answer that they would be able to help my son with this life-changing equipment. Even when the particular type of vest I asked for was out of stock, and we had to "upgrade" to another style that cost more money, the organization was quick to ask ME if it was ok if they changed the order, before even going about handling the 'red tape' on their end.

My son lives in a world where the odds are stacked against him everyday. It is such a blessing to know that there are organizations out there like the Walk On Foundation that are willing to make his days just alittle bit easier. I am so excited for the vest to arrive--to take my son out to his little swingset, to chase a ball around the yard, to go for walks again in his little red wagon. This organization has changed my sons life, and I will never, ever forget what they have done for me, and for my little Joey.

Ways to make it better...

If I had to make changes to this organization, I would...

Nadda, nothing.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served