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Liam D.

The not-so-golden birthday

Pain is a difficult thing to quantify or express. What’s considered painful to one person might not feel the same to another. When someone says they have a high pain threshold, what does that really mean? How do they know it’s higher than anyone else’s?

In 1971, Ronald Melzack and Warren Torgerson partnered to develop the McGill Pain Index, a self-questionnaire that allows patients to give their doctors a good description of the quality and intensity of the pain they’re experiencing. The goal was to better understand the level of pain for a wide range of conditions or injuries.

Towards the bottom are things like sprains, then arthritis, toothaches, and fractures. Even farther up is childbirth (with and without “training,” whatever that means) and the amputation of a finger or toe with no anesthesia. With no anesthesia!

At the very top, classed as the most painful chronic pain condition known to man, is Chronic Regional Pain Syndrome (CRPS). The pain for sufferers is so unbearable, CRPS is widely known as the “suicide disease.”

Four years ago, on his golden birthday - 11 on April 11th - Liam Dodds was diagnosed with CRPS. His whole life changed within weeks, and it was all because of a growth spurt.

In three months, Liam jumped from a size 9 to a size 12 shoe. His achilles tendon didn’t grow as quickly as the rest of his foot, which pulled on his heel growth plate and pinched a nerve. At first, he started complaining about pain in his heel. Within two days, he had extreme sensitivity and couldn’t stand the slightest touch of his foot. 

Luckily - if there was any luck in this story at all - Liam’s doctor immediately recognized it as possible CRPS. In a matter of days, Liam went from being able to wear a shoe to no toleration for socks, then no touch, and then no air. That’s how bad the pain had gotten. And that growth spurt is all it took to rob him of the life he had been dreaming for himself. 

(Donate right here.)

This disease took an active, social, and outgoing kid and turned him into a teen who lost friendships, in-school experiences, and his ability to walk independently.

“Before CRPS, Liam was a straight-A student, active in sports and in life,” said his mom, Kayla. “He loved to be outdoors so much that he couldn’t wait to plan our next family adventure. Liam loved to go hiking, camping, fishing, sledding, and especially playing with his golden retriever, Bowen. But for three years now, Liam has been a boy in a bubble with a daily baseline pain of 7-8/10.”

Some of the highest levels of pain imaginable, all day, every day. How would you handle it?

Because the condition impacts the nervous system, it can spread at any time. The way the Dodd family explained it is like being in constant fight or flight. Everything in the body is in a frenzy, because neurologically, the body is working in overdrive to hone in on the pain.

Blood pressure goes up. Heartrate is high. Digestion is a problem. Sleep is nearly impossible.

Liam’s CRPS starts at his toes and extends about three inches above his ankle. The sensitivity is extreme, and he can’t bear the pain of the slightest touch, and that includes water and even air. 

“We can’t wash his foot, trim his toenails, put lotion on his ankle, nothing,” Kayla explained. “We even try to control air flow, because a breeze can cause excruciating pain - and the cold makes it much worse for him.”

The diagnosis was just the beginning, and their first hurdle was pain management. Clearly, trying to control the air was not a long-term solution for his pain. They started with heavy pain killers, but Liam was only 11 at the time. That wasn’t sustainable. (For reference, adults with CRPS are typically treated with IV drips of ketamine, a powerful anesthetic.)

For Liam and his family, they’ve had success with more holistic treatments, in tandem with cool lasers. 

That particular treatment is only possible at a special clinic widely known throughout the CRPS community - the Spero Clinic in Fayetville, Arkansas. Leading the way, and the innovation, is Dr. Katinka van der Merwe. It wouldn’t be a stretch to call her a saving grace for many patients.

As Kayla told us, “Everyone at the Spero Clinic knows what it means to not touch the area, whatever that area is for the patient. They’ve had an 84% remission rate for CRPS diagnosees, and have gotten to a zero pain result.”

From a 7-8/10 to a 0/10. From the highest levels of pain known to man to no pain at all. Wouldn’t you do anything to try it?

For the Dodds, that was an easy question with an easy answer. They recently moved their entire family, including Liam’s older brother, younger sister, and three dogs, from Tennessee to Fayetteville, Arkansas, just to be closer to this potentially life-changing treatment. 

There was only one problem left, only one hurdle standing in the way of Liam’s efforts to reduce or possibly eliminate his pain entirely: the cost. 

The Spero Clinic is not covered by insurance and families must pay out-of-pocket for the 12 weeks of treatment, which does not include housing or food. Liam was on a waiting list for nearly two years, but his time has come - they’re ready for him now.

We have to give him the opportunity to have a future with no pain. So, we did what we’ve done nearly 500 times (and counting). We turned to our incredible donor family and asked for their support to change a recipient’s life. Thanks to donors like you, he’ll receive 12 weeks of intensive therapy at the Spero Clinic for a total impact of $44,851.

The active, social, and outgoing kid is still in there - he’s just surrounded by a bubble right now. This treatment will give him a chance at reclaiming his life, getting back to school, rebuilding friendships. 

For Liam, his hopes and dreams include a dollar sign. That’s the reality for many of our Chive Charities recipients. And because of your monthly and one-time donations, we chip away at those barriers and build a better future not propped up by astronomical costs and crippling debt. 

The Dodds would do anything to help him. And it turns out, so would people like you. From the worst pain to no pain - we believe in Liam. DONATE HERE.


Editor’s note from Chive Charities’ Executive Director, Brian Mercedes:

It’s time for some real talk - some behind-the-scenes details of the tough decisions and challenges we have to face sometimes at Chive Charities. 

Like many of you, Liam’s story left me speechless. When stories of perseverance like his come across my desk, the question isn’t if we’re going to help - it’s how much can we help? Liam’s mother submitted his application back in December 2021, requesting $33,000 in aid. The Dodd’s had just gone out on a major financial limb and committed to a potentially life-changing treatment plan for their son…they didn’t know how in the world they’d cover the cost, they just knew they’d do anything to take his pain away. 

At Chive Charities, our goal is to give life-changing grants to as many underserved veterans, military families, first responders, and rare medical diagnosees as possible. The tricky part is forecasting our revenue so we can say yes to as many applicants as possible each quarter. We did that back in January to the tune of 23 new families and over $500k-worth of committed aid (both records). I usually plan for an extra 10%-15% contingency in Chive Charities’ bank account in case some of those grant items rise in price unexpectedly. 

A few things have happened since that January meeting: record-setting inflation, the war in Ukraine, skyrocketing prices on nearly all our grant items, combined with other unforeseen factors. On average, the cost of helping each of our families in need has risen 20-25% over what we originally expected. 

So what does all this have to do with Liam? Well, just last week Liam’s mother let us know that he’s already seeing results from his treatments. Based on those results, their incredible specialist recommended the best-case path forward was to add a few new treatments to his plan, to the tune of $11,000. We originally approved $33k and the new $44k price tag for Liam’s treatments made my heart sink as I realized we couldn’t actually cover that amount without affecting our future recipients.

This is one of the most dire circumstances I’ve seen in my 10 years at Chive Charities. And I write this note with a lump in my throat for the pain Liam is experiencing as well as the struggles of all our future recipients. How do you say no to someone like Liam, when an extra $11k could make all the difference? How do you break the news to a future recipient that we can’t cover everything they need? Much like the Dodd’s, we’re going out on a financial limb for Liam and we’re hoping Chive Nation has our back.  

So that’s where we are. This is the challenge we’re facing. We need help so we can continue to cover the needs that will change our recipient’s lives forever. We’re asking for your support. 

If you can make a one-time or monthly donation - we’d be so grateful. To all our existing donors, we’re in this together, and we’re so thankful for your support.

-Brian & the Chive Charities team

Liam D.'s Updates