“Help Alex Recover -Rare, Deadly & Overlooked!

Our Story:

My name is Michelle Roy, and I never imagined my baby boy would ever be exposed to such a deadly toxin after walking out our front door. Taking only but a few steps to my car, could have killed my son and has left our family feeling so vulnerable to the world. Not only did my newborn baby contract a rare and deadly orphan disease; I was struggling with postpartum depression for the first time in my life. I felt hopeless, I felt detached from reality, and I was losing faith in myself, and in my ability to care for my family. However, I never gave up, I never stopped fighting for my son’s recovery, not once, and I am still fighting for Alexander. I am his biggest advocate and I refuse to give up; I’m doing it for my baby boy, Alexander.

At just 7 weeks old, Alexander was diagnosed with Infant Botulism Type A, a rare and life-threatening disease caused by naturally occurring spores found in soil and dust. A disease that flourishes in the stomach of infants due to their lack of gut flora or microbiome, that lives in the human digestive tract and helps humans fight off viruses, fungi, and bacteria that enter the body. The lack of flora in infants allows the toxin to flourish and spread rapidly by separating the muscles from nerves, starting in the gut. This first attack from the Botulinum toxin appears as constipation, next it spreads rapidly through the body separating the rest of the muscles throughout, appearing as Hypotonia, when it is actually paralyzing the muscles. This paralysis of the muscles only affects the infant’s ability to move but leaves the nerves alone creating an illusion of poor muscle tone during testing because the nerves have full sensory function. Once the body is paralyzed, the throat muscles and vocal cords become compromised causing a low, weak, and raspy cry. Lastly, it paralyzes the facial muscles before it attacks the lungs causing sudden death by respiratory distress, quite similar to SIDS, sudden infant death syndrome. This deadly and rare disease diagnosis came just days after we walked past a gardener using a leaf blower while heading to a doctor’s appointment with our children. Despite the visible dust, the blower continued until my fiancé asked him to stop.

We had no idea that a simple walk could expose our son to something so deadly.

In the days that followed, I noticed something wasn’t right. Alexander’s cry weakened, his feedings changed, he was becoming more lethargic. As a mom of two, I trust my instincts, and I documented every change. I reached out to our pediatrician immediately.

On December 26th, the day after Christmas, my pediatrician called with urgency: “Take him to the emergency room now. I suspect Infant Botulism.”

We rushed him to UCLA Santa Monica, where he was admitted under hypotonia (low muscle tone) and tested for possible muscular dystrophy or SMA. He spent 10 days in the hospital as doctors carefully ruled out other devastating diseases. Only after all other tests did they send a stool sample to confirm Infant Botulism—and it came back positive.

His life was saved by early diagnosis, immediate intervention, and the incredible care team at UCLA.

But that care came with a devastating cost.

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The Financial Burden:

Our insurance provider, Anthem Blue Cross, initially denied all coverage, claiming the tests weren’t “medically necessary” and that Alexander could have waited weeks or months for outpatient evaluation—even though Infant Botulism can kill within 40 days by paralyzing an infant’s muscles, including the lungs.

We appealed, and some costs were covered—but we are still left with over $25,000 in bills and have been asked to set up a payment plan of $1,000 dollars per month, an amount we are unable to afford.

Now, we face the unthinkable:

We may lose access to the team of doctors and therapists who have been helping Alexander recover.

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Why We Need Your Help:

Alexander still needs care from:

• Neurologists

• Feeding specialist 

• Occupational & physical therapists

• His dedicated pediatrician

Losing this team would be a huge setback in his recovery, plus it can greatly effect the progress he has already made over the last few months with his care team—and that’s something we simply cannot allow.

This GoFundMe is not just to pay a hefty medical bill. It is to ensure Alexander keeps healing, regains weight properly, steadily, and gradually; that his muscles keep strengthening, and that he continues to thrive on this journey of recovery toward a full and healthy life.

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How You Can Help:

• Donate what you can—every dollar brings us closer to keeping Alexander’s care intact.

• Share our story to raise awareness about Infant Botulism—a disease too few parents know about until it’s too late.

• Pray, send love, or leave a message for our family—your words mean more than you know.

From our hearts to yours, thank you for reading, for caring, and for standing with Alexander.

With gratitude and hope,

Michelle Roy & Family