Help Support the Casacci Family

On September 11, 2024, my best friends Alyssa and Brad Casacci welcomed a beautiful baby boy into our world, Cameron Joseph Casacci. Cameron joined their lives after months and months of determination to become parents.

To talk to my best friend every day and listen to her describe what she, Brad, and Cameron have to endure is, quite simply, horrible. Cameron is an incredible child - he's strong, resilient, obsessed with his mommy and daddy, and has a pair of the most pinchable cheeks imaginable. The Casaccis deserve so much love and support, emotionally, and now, financially.

The purpose of this Go Fund Me is to raise funds for Cameron and his parents. His story will be shared below; however, here's the reality of why we need to support the Casaccis: it's hard to ask for help when you're the one who needs (and deserves) it. Due to Cam's medical complexities, complications, and regular, daily treatments, services, and therapies, the Casaccis are now a single-income family, who are sparing no expense for Cam to receive the best treatment in the country. This means that my best friend, Alyssa, who is an incredible Pediatric Occupational Therapist with a decade's worth of a career helping young children like Cameron, left her job.

Having a medically compromised child is a terrifyingly emotional journey no parent should ever have to endure. The reality of the situation is that it is also expensive to have a medically compromised child. It is possible that the life-changing surgery Cameron requires will need to be paid for by Alyssa and Brad out of pocket - with bills surpassing half a million dollars. As of right now (more info shared below), Alyssa and Brad's insurance continues to deny the surgery. This might force Alyssa and Brad to enter into a different insurance policy, costing thousands of dollars per month more than their current insurance. Here are ways our contributions can help Alyssa and Brad:

Below, I'll share Cameron's story, his medical history, and why insurance continues to deny the surgery.

CAMERON'S STORY:

After sending Cam to the nursery to get some rest following his birth, the Casaccis were alerted that Cam was exhibiting “seizure-like activity,” and he was rushed via ambulance to a higher-level NICU for more monitoring and testing at Sisters of Charity Hospital. There, a continuous EEG and MRI confirmed the worst - Cameron’s seizures were secondary to a blood clot in his left middle cerebral artery, which had led to a large stroke affecting the majority of the left side of his brain. Cam’s tiny brain had suffered from a traumatic brain injury, and doctors were working tirelessly to administer care and medications to control the seizures while one-day-old Cammy fought for his life.

Due to the complexity of his stroke and brain injury, Cam was transferred again via ambulance to the highest level NICU and best pediatric neurology care facility in the Buffalo area, Oishei Children’s Hospital. There, he could be closely monitored by the amazing teams of doctors and neurosurgeons, should he need brain surgery if any bleeding or swelling of his brain worsened. Thankfully, Cam stabilized and, with 19 days of incredible care, was discharged from the NICU - and he has continued to defy the odds ever since.

Because of the stroke, Cam has hemiparesis, or right-sided weakness. Due to being at high risk of aspiration, Cam had a g-tube placed in the NICU to meet his nutritional needs safely. The scar tissue that remains in his brain has permanently damaged motor, language, and visual pathways on the left side of his brain. Cam is seen by an extensive list of specialists and therapists, ranging from neurology to ophthalmology to gastroenterology to physical medicine. Therapies such as physical, occupational, feeding, and aquatic therapy have been crucial to Cam’s progress and successes thus far. Cam has come leaps and bounds, taking all feeds orally and is currently transitioning to solid foods. Although he has lower muscle tone due to his stroke and medications, he makes steady gains towards developmental milestones. He regularly leaves his providers who meet him in shock with the progress he has made since his NICU days.

Cam’s spectacular mother noticed Cam exhibiting abnormal movements again, and after asking neurology for further testing to be done, an overnight EEG once again confirmed our biggest fears - Cam was having infantile spasms, a type of seizure in infants which can be detrimental to a baby’s development. Due to the severity of the spasms, Cam was put on a high-dose prednisone treatment, followed by a course of ACTH injections, which were administered at home. Infantile spasms are a terrible form of epilepsy which do not respond to conventional medications, which is why steroids were used as first-line treatments. Following 5 hospitalizations and stays on the epilepsy long-term monitoring unit, although his spasms improved, Cam’s epileptologist added a third medication, Vigabitrin, which comes with potential risk for permanent vision loss. After two miserable months of intense medical intervention, Cam’s doctor concluded that he has medication-resistant epilepsy, or refractory epilepsy, recommending a rare and drastic surgery called a hemispherotomy, which would permanently disconnect the left hemisphere of Cam’s brain from the right hemisphere in hopes of bringing him seizure freedom. The likelihood of medication giving Cam seizure freedom is only 5%, whereas the odds of this surgery bringing him seizure freedom and dramatically improving his development and quality of life is as high as 92%.

Because of the severity of Cam’s left-sided brain damage, doctors have used the analogy of a computer continuously crashing instead of saving data (brain connections) - we are hoping and praying that severing the unhealthy portion of his brain from the remaining healthy hemisphere will maximize the potential for the right side of his brain to grow and function. Studies have shown that the right side of Cam’s brain will be able to do incredible things like pick up language function (a function that is only housed in the left side of the brain), as the right side of the brain can pick up almost all left-brain tasks before the age of 4. He could live a seizure-free and medically uncomplicated life with “half of a working brain” due to this life-changing surgery.

Because Cam is insured through NY State Medicaid, insurance coverage for all treatments (including brain surgery) outside Western NY are being denied. The denials continue, despite significant medical documentation from Cam’s providers supporting the necessity of out-of-network care for Cam’s surgery, including the fact that a doctor within Cam’s in-network coverage area capable of performing this surgery does not exist. It could not be clearer - Cam’s doctors know he needs immediate surgery to resolve Cam’s ongoing seizures so that Cam’s beautiful brain development can continue unencumbered, especially during this magical window of brain plasticity. Each day his surgery is delayed is another day Cammy has to endure seizures, and a lost opportunity for the right side of his brain to heal and grow. It is excruciating to endure and unfathomable to comprehend.

On June 26, Cammy finally got a break – UPMC Children’s Hospital of Pittsburgh has a nationally acclaimed neurosurgery team led by Dr. Taylor Abel that was able to consult with Cammy on July 1, for surgery on July 3. Not only is the UPMC team one of the best in the country, but this is the only possible place for Cam to have surgery where additional family and a support system are present. Keep in mind, most pediatric neurosurgeons do not operate on children younger than 18 months old or less than 27 pounds. Importantly, Dr. Abel has already made Alyssa and Brad feel comfortable with the surgery – he personally returned calls and emails, has spent hours with Alyssa and Brad reviewing Cam’s records, imaging, and treatment plan and Dr. Abel truly grasps that time is desperately of the essence right now due to the severity of Cam’s brain injury and seizures.

The insurance the Cam receives has continued to denied coverage for the surgery – which is not the first time the insurance has denied care for Cameron (Alyssa and Brad were unsuccessful in establishing patient care at CHOP because insurance would not cover it). In the first denial letter, Independent Health listed providers who do, in fact, not perform this surgery (one being Cameron’s previous neurosurgeon here in Buffalo). UPMC submitted an appeal on Cam’s behalf, after gathering evidence and letters of medical necessity from the providers supporting the fact that an epilepsy neurosurgeon and medical team with as much skill and expertise as Dr. Abel and his team does not exist within their area. Insurance again denied the appeal on 7/25 - delaying the surgery from happening in Pittsburgh.

Alyssa and Brad plan to pursue surgery regardless of covered by insurance, and they need our help to make a heartbreaking and unfair situation even marginally more palatable.