Why are we raising money for Eli's Therapy?

A very good friend wrote to me this evening and voiced a concern that I've had since we started the fundraiser for Eli. Writing out my response was very important for me in coming to to terms with my biggest fear - being under the microscope. My hope with this post is to help bring awareness of the financial details behind Eli's therapy.

This is a VERY long post. So here's the TL;DR (too long; didn't read):

• I make good money - but we made bad decisions in the past and have a lot of debt
• Tonya and I committed to getting our family out of debt
• The cost of Eli's therapy and ancillary costs is ranging from $1600-1800 a week (at an average of 2 weeks per month).
• We have additional therapy that could add another $1500/wk
• We're doing everything we can to cover this on our own (including getting a loan)
• The therapy is working... we're seeing positive changes in Eli
• Insurance is a joke because the medical community doesn't understand his condition
• Even though money is tight - God is providing

Ok... the long version.

I make very good money. I do. My employer has blessed us almost beyond reason. So for us to reach out for financial help was very difficult. I'll admit - as a man I felt a lot of guilt reaching out because I felt I made too much money to be asking for money.

However, I committed to my family a year and half ago that we would reign in our finances. I promised them that we would no longer spend more than we make. So when the cost of this therapy came in... I knew we were in trouble.

I remember the point when Tonya and I realized that we couldn't afford Eli's therapy on our own. We realized we needed help. It was a very difficult decision to open up about it to our friends and family. I even remember warning Tonya that the moment we step out - there would be no coming back - and we'd be under the microscope. However, it has offered us an opportunity to get the word out there about what Eli's going through and what's being done to help people with the same condition.

One of the biggest roadblocks we're facing is the fact that we're dealing with a neurological problem that has been labeled as "picky eating" by the mainstream medical community. Regular practitioners (like our original pediatrician) just put us in standard "feeding therapy" and told us that was all that could be done. Because of the pervasiveness of that mindset, our insurance has done very little to help cover the costs that we're incurring.

Bottom line, we've sought the help of specialized therapists in a very narrow field of study. As professionals, they have a very high hourly rate. To be fair, they're not much higher than a standard medical doctor - ranging from $135 to $340 per hour. However, when insurance says the rate should be about 20% of what we paid and then will only cover about 20% of that amount... we're getting about 5-10% back on what we pay to the therapists.

It is difficult opening up to the financial side of this. However, I believe it is a necessity. I'll be honest. I make good money. Stupid money, really, for what I do (I draw boxes and lines on a whiteboard). But even with that, we're still facing a solution to a problem that's costing more than I make.

So here's the situation we're in:

We see a couple of child psychologists. Their rates vary from $150-$340/hr. We don't see them often, but when we do - the bill is hefty. We've been blessed, though, because they have extended us a lot of grace regarding the bill. They recognize the situation that Eli is in - and they are more concerned with seeing him improve than in getting paid. Still - this is their livelihood and I want to make sure that they are adequately compensated for their work.

The main therapy that we're getting right now is a long term investment. It is a type of movement therapy - and I won't get into the details here. But it involves many trips to Chicago and many sessions when we're there. At $135/hr across 8-10 sessions, the average cost for those sessions have been running an average of $1200/wk (with 1-2 weeks between sessions).

On top of that therapy, we're now also seeing a neurologist that specializes in conditions similar to Eli's. Her rate is $300/hr. Just a few sessions with her shot our costs through the roof. She came back with a recommendation that would have cost an additional $1500/wk. We're working on negotiating that right now.

Then there's the costs of traveling. At first, we were staying in hotels and eating out. That alone ran us close $600/wk (not including gas). We've been blessed to have family in the Chicago area who is letting Tonya and Eli stay in their home during therapy sessions. Tonya is also taking more food with her to cut down on the food bill. It still costs close to $300 for miscellaneous items, gas, even tires (we've had to replace all 4 since this adventure started), etc.

All in all, I projected that the cost of the therapy for this year alone would run about $20,000. And that was before the neurologist was factored in.

So far, we've raised $2700 on GoFundMe. That is a huge blessing and - money aside - the prayers and awareness of what Eli is going through has been more important than anything else. But as you can see - that amount covers about 2 weeks of therapy.

And of course - as all this was playing out - our furnace went out. As a result, we had to make the decision get a loan. It was tough because I was wanting to get through this without adding to our existing debt. But the need for a furnace and the hope of this therapy was too much to pass up (plus, we got a great deal on the loan). It was actually an extension of an existing loan. After the furnace, we were left with about $12,000. That pool of money is now down to around $7,000 and we still have the GoFundMe money available.

After updating my projections, we're going to be tapped out around June. I do have one more bonus coming from work and I think that will float us a bit further - maybe through August.

We dropped our cable and have been considering the phone (though I'm hoping we can consolidate utilities to keep the phone). I can't cut much more without turning off something critical. We have our piano on the market and I'll probably be selling my guitars and other studio equipment before this is all over (if it's ever really "over").

I've put my hobbies pretty well on hold to save money as well. Our vacations are also on hold until we get through this for both financial and timing reasons. I'm praying like crazy that our vehicles (both paid off - woot!) will hold up because there's zero margin for a car payment right now.

We're doing what we can to cover this on our own. But the reality is - there will come a point where we have to decide - do we go further in debt? Or do we say we can do no more?

This had Tonya in tears today (ok - me too).

Eli saw her in tears. He sat down and asked her, "Mom, what's the matter?" She didn't want to worry him about it. But he was insistent. "Mom, talk to me."

That kid amazes me.

She was honest. She told him that we're struggling to pay for his therapy. But she assured him that it would be ok. But it was obvious that she was upset.

Eli said, "Mom, I'll try a muffin with apples in it tomorrow."

That's huge. That's bigger than huge. That's huge-tastic.

Is this therapy worth it? Yes.

In January - we had a 9 yr old that couldn't articulate his worries and fears. He couldn't even read. He couldn't think about food or school without getting nauseous.

Today, he committed to trying a food that has scared him - LITERALLY half to death. Tonight, he sat down and read a book aloud for over an hour!! I'm seeing change in Eli. This therapy is working.

I look back at what we've gone through. I look at what we're about to step into. God is providing. God is opening doors. I know that at the end of myself - when all the money is gone and I wonder what to do next - he will provide for us. It's been a lesson for myself in humility, patience and trust. It's hard, but I'm growing and learning things about myself and God's love through what Eli is going through.

We have other opportunities coming from this as well that could use prayer. An independent writer has taken an interest in our story. We're hoping that through his work of writing our story as well as help from our primary therapist, we can get Eli's story out there. This is a bigger problem than anyone ever imagined. People are coming out of the woodwork - young AND old - with the same condition saying, "Thank you for giving us a voice!" I believe that what's coming out of this is bigger than us - and that's exciting.

As I wrote this message to my friend, I was pretty much in tears. My biggest fear as a father and husband is that we hit a point that I can't provide for my family. I've lost a lot of sleep worrying about how I'm going to get my little boy the help he needs. But God has reminded me that I'm not in this alone. He's provided for us - through friends, family, and in ways that I never could have imagined. And he will continue to do so.

Thanks,
Paul Kimbrel