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This fundraiser ended on 09/30/12

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Our goal is to raise enough money for Simon to go to Baltimore for much needed feeding therapy at the Kennedy Krieger Institute.

Simon has cystic fibrosis and type 1 diabetes, two chronic and life-threatening conditions. He faces many challenges with these diseases, but sometimes his biggest challenge is that he won't eat.

When Simon was three months old we had to request a feeding tube for him. He barely ate during his first three months and finally stopped eating all together. For the past three years we have tried numerous therapies and techniques to get him to eat, but we've made very little progress. We don't know why Simon wouldn't eat as an infant, but we do know that his problem now is behavioral. He never learned how to chew or swallow, so those seemingly simple processes cause him great anxiety now. As one therapist put it, "It's like trying to teach a dog how to be a puppy".

This summer we are hoping to take Simon to a special feeding disorders program at the Kennedy Krieger Institute in Baltimore. This program is quite costly, and while we do have insurance, the University of Colorado just switched carriers and now KKI is considered out-of-network. This means that we will likely have to pay a $12,000 out-of-pocket maximum before health insurance will start paying. That is on top of all of our travel costs.

Simon's illnesses have put great emotional and financial strain on our family. We want to do everything in our power to help him, unfortunately we don't always have the financial resources available to do so. I can no longer work full-time as I need to stay home with Simon. If we go to KKI, Simon and I will be in Baltimore for two months. This means our family will lose the part-time income I do earn. It is very difficult to ask for this kind of financial help, but we are desperate to get Simon eating.

The fact that Simon doesn't eat might not seem like a big deal, but it is. It complicates every aspect of our lives and makes type 1 diabetes even more difficult than it already is. Simon receives three 1-hour g-tube feeds every day as well as a continuous overnight feed. During the day he has to wear a small backpack with a feeding pump that gives him his nutrition.

We are so thankful for Simon's feeding tube. He wouldn't be alive without it. Yet if Simon were able to eat on his own it would take a tremendous weight off of all our shoulders. He will be attending pre-school in the fall and things will become much more complicated if he is still relying on his tube for food.

I know we've asked for you to donate to Great Strides before. It's a lot to ask for your support again. If you do have the financial resources to help Simon get to Baltimore, we would be so very grateful.

Thanks you so much for your support and encouragement.

Much love,
Jill, Pedro & Simon Caceres
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