CDHi President’s Blog – Walking on the Camino Ingles for CDH – April 7, 2024

April 7, 2024 – Betanzos, Spain

I was forced to take another rest day today.

I don’t want this walk or this blog to be about me complaining about my physical issues and illnesses. That’s not what this Camino is supposed to be about for me or the Charity. But, I am not healthy and I knew this walk was going to be a struggle, but I was determined to do it.

As much as I hate to admit it, Long Covid takes much more toll on me than, I let myself believe. I have been battling neuropathy in my feet for over a year, but it is not severe. It’s more than annoyance sometimes. It’s not constant and I am not always in pain, it honestly only hurts when I move in specific ways. And I’ve learned how to adjust it. It really hasn’t slowed me down at all. However, I have never walked this much in this short of time.

The bad news is my neuropathy has gotten a lot worse from the walk. So I’ve needed longer to rest. Though I honestly don’t think that rest is really going to help anything get better, it will help prevent it from getting worse.

The good news is that I think I have successfully avoided any foot blisters!

My ankle has really benefited from the rest and no longer hurts.

My back is doing better, but I really, really need to see a chiropractor. The closest chiropractor is in Santiago so when I’m finished, I can go.

I have been working a lot on the computer. I have tackled over 1000 emails in the past two days and that was much needed. I still have a couple hundred to go though.

Bit behind on the blog and some posts, but I am getting those caught up as well resting, I’ve had a chance to see everything that everyone else is posting and I’m really enjoying reading about the CDH families and seeing lots of photos and videos of the patients.

It’s wonderful to see so many patient families, charities, and hospitals raise awareness this year. I love how our community really pulls together every April.

I am almost halfway through the Camino!

Knowing that is making sitting here very hard for me. I want to get back on the road and get to the finish line!

I knew I’d be slower than most, that’s okay. The guidebook suggests a daunting 24.8 km next, all steeply uphill. I’ll break it into manageable segments, tackling half each day.

Facing an uphill battle, sometimes you need to pause, assess, then push on.

That’s what I’m doing now, on and off the Camino.

Tomorrow’s forecasted rain and my solo status make waiting sensible. I’ll face the mountain when it’s safer.

Back home, life continues. A childhood friend lost her father; my dad’s surgery is upcoming; friends face health crises. Here I am, far away, juggling personal and charity responsibilities, a reminder that charity leaders bear their own burdens, not superhuman, just deeply committed.

It’s tough feeling unable to fix everything. My drive stems partly from my son’s loss; I can’t bear others’ grief. Despite the frustrations and anger at my perceived failures or the systemic shortcomings in addressing CDH, I have to keep going. We all have to keep going.

At Bruma’s peak, I’ll advocate for CDH awareness and support by yelling on the top of the mountain!

Maybe I’ll be heard. Maybe people will hear me but they won’t understand what?I’m saying in English. But perhaps, just perhaps, I’ll inspire action, fostering support for CDH research and families. Will you all hear from me Spain?

Awareness ribbons like the pink for breast cancer or yellow for troops are known worldwide. Our CDH ribbon deserves that recognition too, symbolizing hope and collective effort.

As I prepare to get back on the road, my sweatshirt and silly hate featuring the faces of CDH warriors, my actions aimed at broadening awareness and fostering unity.

This is more than a physical journey; it’s a call to action, a plea for awareness and support, urging others to join in advocating for these children.

I couldn’t find the right words to say here so I asked AI to write them for me. This is what it came up with:

“On this Camino, every step carries the weight of a larger mission. It’s not just a path through Spain; it’s a journey through the landscape of human struggle and resilience, particularly mirrored in the lives of those affected by CDH. I walk for them, carrying their stories, their pain, and their hopes as I navigate each mile.

The personal challenges I face on this trek—be it health issues, emotional burdens, or the physical toll—are reflections of the broader journey we undertake in the charity. It’s about pushing limits, confronting realities, and finding strength in places we didn’t know existed. It’s a testament to the power of human will and the importance of collective effort.

The Camino teaches that while we walk our paths individually, we’re part of a larger community, each with our roles, struggles, and contributions to a common cause. My walk, laden with personal introspection and public advocacy, is a microcosm of the work we do at the charity. It’s a balance of carrying personal grief and professional responsibility, of facing uphill battles, and finding solace in the shared journey of hope and healing.

As I ready myself to continue, I do so with a clearer purpose. It’s not just about reaching Santiago; it’s about carrying the message of CDH awareness every step of the way, making sure that with each footfall, I’m echoing the needs, the pain, and the hope of our community.

I’m walking this Camino as a pilgrimage for change, a trek for awareness, and a journey for healing. It’s a personal challenge and a public statement, each step a narrative of struggle and resilience, each day an opportunity to advocate for those who are battling CDH.

So, as I climb the mountains ahead, both literal and metaphorical, I carry with me not just the hopes of reaching Santiago but of making a difference in the lives of those affected by CDH. This Camino is more than a journey; it’s a mission, a plea, and a promise to keep walking, keep advocating, and keep fighting for every child and family facing the challenge of congenital diaphragmatic hernia.”

And I thought I was too wordy!

It’s a bit over the top, but then, so am I. So is the charity.

That’s what these kids need.

Join me virtually! Vlogging from the Camino de Santiago in Spain for the 2024 CDH Race for Research.

Sponsor or donate at my official fundraiser site –

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Run / Walk / Cycle with me!

Learn more about Congenital Diaphragmatic Hernia or donate directly to the charity at

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