Help a Disabled Veteran Family Access Lifesaving Specialized Care

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A Veteran’s Duty Never Ends — Even at Home.

After serving his country, Carrie’s husband John came home with permanent injuries that left him 100% disabled and officially rated as unemployable by the VA. Despite his limitations, he’s always found ways to support his wife and their six children.

But now, the family faces a new challenge: Carrie’s health has taken a serious and still-undiagnosed turn. The path to a clear diagnosis has already required multiple out-of-state medical trips, specialist consults, and complex testing — and the journey is far from over.

She now requires full-time assistance, and John has had to step in as her caregiver, placing further strain on his already limited physical abilities — and their financial survival.

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NEW DEVELOPMENT: FOX CHASE CANCER CENTER

Carrie was accepted for specialist review at Fox Chase Cancer Center in Philadelphia, where nurse coordinators for urology and gynecologic oncology are preparing second-opinion evaluations and referrals for her case.

This means she will need to travel from Missouri to Pennsylvania in as little as two weeks for highly specialized diagnostic and treatment planning.

While many services at Fox Chase will be covered under CHAMPVA, the following will not be covered:

    •    All travel and lodging expenses

    •    Childcare costs during travel

    •    Alternative treatment options

    •    Specialized compounded prescriptions required due to her alpha-gal allergy and mast cell activation syndrome (standard drug ingredients are allergens and must be substituted)

Until these out-of-pocket costs are raised or earned, Carrie cannot safely proceed with care at Fox Chase — and the window to be evaluated before her currently scheduled August 20th diagnostic laparoscopy is closing fast.

Our goal is to get her evaluated by the specialists at Fox Chase before the August 20 surgery to ensure the right surgical team is handling her case for the best possible outcome.

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CURRENT MEDICAL REALITY

Carrie already lives with complex, confirmed conditions:

    •    Classical Ehlers-Danlos Syndrome (cEDS) — rarest variant

    •    Systemic Lupus Erythematosus (SLE)

    •    Pelvic Vascular Congestion Syndrome

    •    Chronic Bladder Retention (neurogenic suspicion)

    •    Vasovagal Syncope

    •    Spontaneous cerebrospinal fluid (CSF) leaks and Empty Sella Syndrome

    •    Sagging brain on MRI

Symptoms she is currently experiencing on the daily-

Pelvic Pain & Reproductive Symptoms

• Constant, severe pelvic pain for >2 months (no longer cyclical)

• Deep pelvic pressure that worsens with sitting and movement

• Pain radiating toward the pubic bone and sacral region

• Loss of sensation in the upper vaginal canal during exams and intercourse (3–4 months duration)

• Post-coital vaginal bleeding—bright red, with heavy clotting, occurring hours after intercourse

• Heavy, irregular bleeding with large clots outside of typical menstrual timing

• Sharp, stabbing uterine pain triggered by sudden pelvic movement

• Confirmed and diagnosed pelvic vascular congestion, especially dense over the uterus and cervix

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Bowel & Gastrointestinal Symptoms

• Alternating painful diarrhea and severe constipation, with very slow gut motility, with recent (June 2025) clear upper endoscopy and colonoscopy

• “Endo belly” bloating that can persist for hours to full days, daily

• Rectal pressure sensation with an inability to evacuate despite urge

• Tenesmus-like feeling (feeling of incomplete evacuation)

• Mucus-like rectal discharge intermittently

• Delayed bowel movement even with laxatives (17–20 hours to onset)

• Cramping abdominal pain after eating (suspected partial obstruction potentially from deeply infiltrating endo on bowel loops, family history of this, mother, paternal grandmother, and paternal aunt.)

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Bladder & Urinary Symptoms

• Urgency and incomplete emptying despite strong urge

• Sensation of bladder pressure/fullness, worsened when sitting

• Known focal red area of bladder wall irritation on cystoscopy, with an internal smooth-surfaced indentation (currently under repeat evaluation)

• History of prolonged Foley catheter placement postpartum with suspected sequelae

• Urologist suspects bladder wall involvement by DIE but cannot rule out external compression by expanding uterine size and pelvic organ congestion based on imaging

• Intermittent bladder retention with active self-catheterization and active straight catheter prescription (my urethra gets so swollen it won’t function on its own. The direction of the urethra changes day-to-day making catheter insertion difficult, painful, and always changing direction and it seems as though the catheter placement combined with bladder base positioning doesn’t allow for the straight catheter to fully empty me every time. I and my current urologist are having a hard time understanding why this is happening)

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Neurological & Nerve Symptoms

• Numbness and tingling in hips, thighs, and perineum during prolonged sitting

• Pain suggesting possible obturator nerve or pudendal nerve compression

• Fatigue with pain radiating down toward pelvic floor

• Diminished vaginal sensation compared to baseline

• Confirmed and diagnosed Vasovagal Syncope with sudden adult onset June 2023

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Systemic & Metabolic Symptoms

• Rapid unintentional weight loss (~80 lbs) over four phases within the past 12 months despite 10 years inability to lose or gain weight

• Chronic fatigue and malaise, worsening over time

• Episodes of metabolic instability (documented acidosis during and outside of menstruation, requiring IV pain management and hospital ED visits starting in March 2025)

• History of (Lyme and EBV) and current recurrences of autoimmune disease (Lupus and Hashimoto’s) and confirmed genetic connective tissue disorder (cEDS) Classic type Ehlers-Danlos Syndrome

She is actively undergoing workups for additional serious conditions now under clinical review.

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WHERE DONATIONS GO

Right now, they are:

    •    Paying cash for all out-of-state medical care and travel

    •    Covering second-opinion radiology reads that have already revealed critical discrepancies missed by large hospital systems

    •    Managing lodging, childcare, and lost wages during necessary medical travel

    •    Paying upfront for compounded prescriptions and therapies not covered by CHAMPVA

They own their home but still have a mortgage and household expenses, with no additional income while full-time caregiving is required.

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WHY NOW

They are reaching a breaking point — not because of one single crisis, but because of the weight of all of it happening at once.

The opportunity to get answers and proper specialist care at Fox Chase Cancer Center is within reach — but it cannot happen without immediate help.

If legal support becomes necessary based on future findings, we may also need to increase the goal to meet those demands — but this campaign is focused on the immediate need.

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HOW TO HELP

    •    Donate what you can — even small gifts make a big impact

    •    Share this with anyone you know who supports veterans, caregivers, or rare-disease families

    •    Keep this family in your thoughts and prayers

They’ve sacrificed so much in service and in strength. Let’s stand with them now.