DontStopFghtgForValerieC

 

2/24/26

I don't think I took a breath... I think my heart stopped beating... I'm not sure my eyes saw clearly... Every word the surgeon spoke I'm not sure I wanted to hear, I'm sure I didn't want to hear. As I hit replay I realize I'm very comfortable with my surgeon (this is his 4th surgery on me so he's familiar with my insides!). He was very honest and while it may have instilled permanent fear, it also allowed me to trust him. 
🤦🏼‍♀️🙏 The Verdict....moving quick..🙏🤦🏼‍♀️ Surgery Monday... So, short and sweet... He basically said due to the many previous surgeries and SMAS should he get in, take a look around, prepare to perform, find it too dangerous, he'll pull out (This CPB is usually held for cancer patients, pain, but also for extreme situations like mine). The typical complications are beyond what I'm in fear of. I have to be held after because of meds and low blood pressure so I'm not sure how long I'll be there. There was a lot more to make me worry but above all he said to take my recovery VERY SERIOUSLY...
I'm going to be bed bound again and have Mike, family, and friends to help with the house and family💕❤️🙏💕 I'm so grateful, my sister is even giving me the gift of taking me to the hospital on Monday (that's my way of asking you Carolyn Barr!!!!🤗🤗🤗🤗🥰 Was that cute?!?!?) 
We are, again, asking for help.... 
So long as my children are taken care of I'll survive. 
I finished my directive and living will... This is the reality...the stage of my life... What life?

 

(😳A reminder: your incredible donations are helping us in ways you don't understand! We prioritize the children and their food accounts (it lessenes my need to make them lunch everyday), Rocco's therapy EVERYDAY, focus on our high surgical bills, ordering out, running out of suppliments so I'll repost my Amazon list, specialists, medications, etc.🙏)

 

💛 Help Valerie Fight continue to fight her SMAS and Care for Her Children

Valerie is one of the strongest women I know — a devoted mom, advocate, and fighter who refuses to give up despite facing a devastating, rare illness.

 

💔 What Valerie Is Facing

Valerie lives with Superior Mesenteric Artery Syndrome (SMAS) — a rare, painful, and life-threatening condition that affects only 0.1–0.3 % of the population. In severe cases, the mortality rate can reach 33 %. Sadly, Valerie’s condition falls within that high-risk range due to late diagnosis and multiple complications.

 

Over the past two years, she has endured six major surgeries, including feeding tubes, gallbladder removal, intestinal and colon resectioning, and a gastrojejunostomy. Each procedure brought new complications — severe infections, blood clots near her heart, and allergic reactions that made recovery nearly impossible.

 

Despite countless hospital stays and endless pain, Valerie has continued to search for answers, traveling to specialists in California, Maryland, and New York Presbyterian, even meeting with Dr. Alvear, the pioneer of a specialized SMAS procedure. Right now, though, she is at a standstill — her body is depleting, her strength fading, and her options limited.

 

👩‍👧‍👦 Fighting for Her Family

Valerie is also a mother of two special-needs children — Rocco, who is profoundly impacted, and Lily, who is higher-functioning. Caring for them requires constant attention, love, and energy — things that are increasingly hard for her to maintain.

 

Even on her hardest days, she stays up all night with Rocco, changes sheets, packs lunches, and greets the school bus. Her husband, Mike, works long hours outside the home, but with Valerie’s ongoing medical crises and lost work time, the family has been stretched to its limits financially and emotionally!

 

💫 What She’s Lost — and What She Still Hopes For

Before her health declined, Valerie founded a nonprofit organization for autism and neurodiversity inclusion, education, and acceptance — a passion project she had to give up when her illness worsened. But her heart to help others has never faded. Now, she needs that same compassion returned.

 

💖 How You Can Help

Your contribution will help cover:

• Specialized medical consultations and procedures
• Nutritional supplements and daily medical care
• Travel expenses for out-of-state treatments
• Family living costs during recovery

Every dollar counts. Your support gives Valerie a fighting chance to regain strength, continue seeking treatment, and stay present for her children.

 

“I’m exhausted, but I’m not giving up. How could I? Not with the friends and family who love me — because family isn’t always blood.”

 

Please consider donating, sharing, or leaving a message of encouragement.

Together, we can help Valerie keep fighting with dignity, courage, and hope.

 

💛 Thank you for helping Valerie and her family through this battle.

 

 

PREVIOUS UPDATES:

 

🚨 Put pride aside and let my body be my guide🚨

We are overwhelmed with gratitude for everyone who has contributed to our journey. From dear friends (multiple times) to incredible strangers, every donation has made a profound difference, and we feel blessed beyond words.

As time passes, I find myself continuing to struggle with my health and it's new conditions. I have an apt. the second week in January with a new gastro to discuss further pain management and other options. As well as a specialist to discuss the multiple chronic conditions (MCCs) and comorbidities that my body may have clustered due to the SMAS; I had a phone visit and it was explained that there are (two we discussed) that may have become the issue and why my body is doing the things it's doing (at least there may be an explaination!). Until I have anything official I'm not saying what we discussed.  Of course there is no cure, just management. Despite doctor’s visits and seeing specialists, the stress is still very real, and I long to be the mother and wife my family deserves. Your generosity helps ease some of that burden, allowing us to cover essential needs like meals, out-of-network medical appointments, bills, suppliments, etc.

If you've already given, thank you from the bottom of my heart! But if you can help further, I kindly ask you to share our story with others. Text, email, or reach out to anyone who might be able to assist us. Every little bit helps! I will be resharing our meal train and the supplements I need to survive.

Thank you again for standing by us during this time. We are honored to have such a loving community. Truly, I've never felt so blessed.

With all my love....

UPDATE:

Christmas is upon us and another procedure behind. I had such high hopes for a miracle, to wake up the next day and feel healed... Let's be real, at least to have less pain...a little pain? No more pain? After what happened last time I was just so afraid.... going in was scary for me so it was comforting having my team by my side going in and coming out. It was a rough ride home. My skin was crawling. They wanted me to stay for nutrition but it just wasn't the time...

Yes, a routine surgical procedure for most individuals....This was totally not the case. My entire right side was sore and it hurt to breathe. I couldn't sit up and everything felt "off" all weekend.  I called my pain management team today and we went through our usual banter, always wishing they could do more- but it was explained because of massive scar tissue they are very limited in ANYTHING that can be done, this also limits any surgeries or procedures in the future.... including the celiac plexus nerve block done by only specialized gastros, speaking of.... I would ask my gastro but my gastro dropped me. That's right. They aren't familiar enough with SMAS and aren't comfortable treating me (I have to say I give them great respect for being honest and I'm thankful they gave me the opportunity to go somewhere that they are more educated with my syndrome). I was introduced to a new doctor today after all this and will be meeting him in the new year. While they do agree it's all about management here on out, I'm looking forward to a new set of eyes. 

Until then I'm doing my best to keep my body nourished, spirits up, and hope that a new year will bring life back into my body that has so quickly depleted. Body, my body, not me. I want to live and enjoy this life, not be forced to bed curled up in pain. 

I would be remiss if I didn't take the time to thank each and every one of you for your support. Not only financially, but mentally and spiritually. I've never felt this broken or lost.... mostly for the kids. But the outpouring of support has been the greatest miracle I could have asked for. God forbid anything should happen I know there's an amazing family looking out for mine. While I'm scared, I'm not afraid....
I love you🫶🏼💕

 

Update (Thanksgiving):

I simply wanted to take today to say thank you to everyone who has made a donation, sent food, visited, or provided gifts for my children for Christmas. You have no idea what you mean to us. With another surgery coming up soon and my health declining fast we appreciate all the help we can get.

Happy Thanksgiving🦃

We love you

 

CURRENT UPDATE (Medical):

In the past few weeks I felt an incredible decline in my health. Everything hurt, from walking, to speaking, opening my eyes, to brushing my teeth, some days I couldn't put shoes on.  I began tracking every little thing, not only on paper but I got a medical device that keeps the hard stuff recorded for you.  Not only was I experiencing these terrifying, painful episodes but two women from my SMAS support group, my age with children, passed away. My fear only grew and grief just amplified. Having my children does makes me fight harder, hell, no one will ever say they fought like me, but not being able to change my son, having my daughter beg me to brush her hair, my heart is being crushed. What I'm leading up to is on top of my SMAS diagnosis I was recently diagnosed with fibromyalgia...another extremely painful disease that tortures your body...not only your body, but EVERY SINGLE PERSON around you! There have been days I can't get up! The pain is electric through my veins. At least now we can take new steps to manage. Only it means more medication, new specialists, extra testing, more bills. But, I see relief in sight. That's what counts. 

Thank you for being part of and staying for the journey. This scary, horrifying, page turning, ready to be over and have a happy ending journey...

I love you from the bottom of my heart! The strongest, most resilient, loving organ I have. I see you...and thank you.. We can do this.

 

 

UPDATE (a message from Valerie):

It goes without saying we are blown away by the support of our family, friends, even strangers. There are no words to properly thank you for, more than generous, donations. Because of you we no longer struggle to purchase my powder and liquid supplements, protein jellos, Boosts, and other products my nutritionist has guided me to buy in order to, not only attempt to maintain, but gain weight to find some relief in this losing battle against SMAS. These are also products that aim to enrich the nutrition I'm lacking.

In addition, for those of you unaware, my body is continuing to deplete and still losing weight. I'm lined up for another procedure 5 days before Christmas and with great hope will come home the same day.

With that said, come the end of the day I'm exhausted and with your funds we're able to purchase dinner (when those of you who haven't cooked for us; amazing) because I'm too tired to stay on my feet. This goes for the children's lunch as well. I'm able to fund their accounts so I can get as much rest as possible in the mornings. Especially because many nights I'm up for hours with Rocco.

Throughout this journey, trying to find answers to one of the most complicated diseases known to doctors, I've also been able to pay for specialists I never thought I'd be able to see.

So again... Thank you for your donations.

This really is the season to believe in miracles.

While I'm still praying for answers you are all truly helping me remain comfortable and the family at peace.

"Slowly disappearing, never giving up!"

 

Last Update: January 2026

Lately, sharing my journey has felt daunting, primarily due to privacy concerns. Yet,  I was told to keep writing — that it's inspiring, insightful, and a powerful reminder of the strength that lies within a mother. Today, I want to share a raw truth that unfolded when speaking to my doctor this Monday.

A little over a year ago, I was diagnosed with Superior Mesenteric Artery Syndrome (SMAS) due to COVID. More recently, fibromyalgia and chronic fatigue have joined the list. My body has been a battlefield, previously fighting against Epstein Barr, gastroparesis, and complications leading to major surgery in 2015. While these conditions may appear tolerable at times, they’ve taken their toll. 

When you mix this brewing storm with new, catastrophic diagnoses, it creates an exhausted body — a weakened host unable to fight as it once did. During my discussion with my doctor, I had to explain the reality of my depleted health. 

I shared a heartbreaking story from my SMAS support group about a member who passed away from a simple complication. This added fear was validated during our talk. My complex syndromes can turn a routine cold into something far more severe, and that reality weighs heavily on my heart. We began discussing preparing my living will, a conversation that no one should have to navigate, and  yet here we were. 

And yes, I know some might think, “Why is she sharing this?” But it’s vital. Because every day I wake up, make breakfast, and play with my kids is a victory worth celebrating! Hard days? They’re real and allowed. My pain is part of my journey, not just a footnote. What my body endures isn’t a walk in the park; it’s a daily confrontation with uncertainty.

I’m blessed with an incredible support system, from Mike being home with me to my family and friends always around. The doctor’s best advice? Rest. Slow down. It’s a mantra I’m working hard to embrace — I push myself too much. This is the same thing the kids Case Manager said yesterday! That's how I'll go down, she worked too hard!

💖 But there's something exhilarating about just being present for my kids, even if it means sitting more or ordering takeout instead of cooking. We might not play hide and seek, but we paint nails and read stories! Every effort I can muster counts, and knowing that resting now helps me be there longer for them is what truly matters.

💔 Yes, my journey is painted with challenges, and the inevitability of life’s end is palpable. But I still hold hope and strength in my heart, striving to be here for my children as long as possible.

I humbly ask for your support today through our fundraiser. Each donation helps tackle overwhelming medical bills, therapy for Rocco, take out, and day-to-day needs during this scary time. I'll also repost my suppliments if you'd like to help.

🙏 Every little bit helps us as we navigate this uncertain terrain together. Thank you for being part of this journey with me. Your love and generosity mean the world! 

 

Mid-February26

When I, myself (yes, I know, I is myself..."I" clarified), post our Fundraiser I feel awkward, uneasy...like I'm allowing my pride to faulter. However, the last few days have been a tremendous struggle and a reminder there is ZERO shame in asking for help. 
🎉Help! 🎉(that was me asking for help)
Here's why I'm bringing it up again...
💔DRUMROLL.... We're looking straight down the barrel of another procedure and I quote, from the page documenting the info regarding it... "Complications have been long reported and include diarrhea (🤗 your welcome), back pain, paraplegia (😳), postural hypotension, pneumothorax, and local anesthesia toxicity." This is for patients with ZERO underlying conditions (I have ✋✋✋I can't even count on one hand!). It's a Celiac Plexus Block; a surgery done endoscopically, proven to help the pain, but does it outweigh the risks?!