Fighting for a Child the World Counted Out: Mason’s Story

At White Glove Community Care, we meet extraordinary parents every day — but some stories stay with you. From the moment we met Michelle Emond, Mason’s mom, her strength was undeniable. A mother who advocates fiercely, shows up relentlessly, and never stops believing her child deserves every chance to succeed.

Today, we’re stepping aside and handing her the mic — so you can hear her journey, her heart, her story, in her own words.

Mason’s Story Begins

Mason’s journey began before he was even born. During my pregnancy, we learned that he had suffered two strokes in utero. At 33 weeks, we were told his prognosis was grim and were advised to terminate the pregnancy. Instead, we chose to fight for him. We researched every option available and flew from Florida to Boston so Mason could be born at one of the nation’s top children’s hospitals. Just one week after birth, he underwent brain surgery to relieve pressure on his brain, and despite our hopes, he suffered a third stroke. Still, we never gave up. Over the years, we continued searching for anything and everything that might help him, including traveling to Duke Children’s for a cord blood infusion in hopes of improving his neurological outcomes.

As Mason grew, we learned the full scope of his medical complexity. He was diagnosed with cerebral palsy, cortical blindness, a rare genetic condition called COL4A1 (Gould syndrome), and Lennox-Gastaut syndrome, a severe and debilitating seizure disorder. Mason is nonverbal, wheelchair-bound, g-tube-fed, and requires full assistance with all aspects of daily living and constant medical monitoring. While this journey has been devastating at times, it has also shown us what strength, perseverance, and love truly looks like. Private duty nursing has made it possible for Mason to remain safely at home, surrounded by family, comfort, and dignity. Securing nursing services has not been easy, but we continue to fight not just for Mason, but for every child like him. He is our miracle, and with the support of compassionate in-home nursing, he continues to show us every day why choosing life was worth it.

Beyond his medical needs, Mason is a bright light in our family and brings smiles both at home and at school. He has a gentle spirit and presence that fills the room, even without words. He responds to familiar voices, loves the most unexpected sounds that make him laugh uncontrollably, enjoys music, and looks forward to dressing up every Friday for school. Even in the smallest moments, he means everything to us. Mason has taught us the importance of patience, perseverance, and unconditional love.

Walk us through a typical day with Mason — what does it really involve behind the scenes?

Our family’s life really revolves around Mason and making sure he is safe, comfortable, and able to enjoy his days as fully as possible. A typical day includes managing medications, monitoring his health needs, coordinating therapies, school or learning activities, and balancing family life around his care. There is a lot of planning behind the scenes, but we take joy in simple moments like laughing together, small routines, and celebrating progress wherever we find it.

Providing care at home allows Mason to remain in a familiar and comfortable environment. Having him at home reduces stress, improves his continuity of care, and supports his overall quality of life in ways that other settings cannot. Home is where he truly belongs.

At what point did you know you needed clinical support in your home?

We realized we needed private duty nursing when Mason’s medical needs became too complex to manage alone without compromising his safety or well-being. Mason has a rare seizure disorder that requires 24-hour services to monitor his needs. At any moment, he could need lifesaving skilled care that my husband and I are not capable of providing him. I’ll admit that one of the hardest moments on the journey has been realizing that Mason’s medical needs could not always be met consistently without professional nursing support. Knowing what he needs and fighting to secure it while also being his parent has been emotionally exhausting.

What hesitations did you have before bringing a nurse into your home?

I worried about trust, consistency, and whether someone would truly understand Mason’s needs. Inviting nursing care into your home is a big step, especially when it involves your child.

What changed for your family once private duty nursing became part of your routine?

Having private duty nursing brought structure and predictability. It reduced constant crisis management and allowed us to plan our days with more confidence.

It allows me to focus on being Mason’s mom, not just his medical coordinator. It also lets our family spend more meaningful time together. It allows me to support our family business and to help provide for the family. Without nursing support, I wouldn’t be able to contribute.

Getting a nurse at home was a turning point for us. Things began to feel more manageable once private duty nursing became part of our routine. Having trained nursing support in our home brought stability, consistency, and a sense of safety that we didn’t have before.

Looking back to the early days, what kind of support made the biggest difference for you?

Compassionate, skilled nursing support mattered most—someone who feels like family. People who listened, followed care plans carefully, and treated Mason with the dignity he deserves. In the early days and even still today, a restful night without the fear of him having a seizure and having to pack up and go to the hospital.

On the days that feel overwhelming, what helps you push through?

What keeps me going is Mason himself. His resilience, trust, and spirit remind me why advocating for him matters. Support from family, faith in doing what’s right, and the belief that consistent nursing care can improve quality of life have also carried me through the hardest moments.

What keeps you hopeful as you look ahead?

Hope comes from progress, even when it’s slow. Knowing that consistent, skilled care can make a real difference motivates us to keep moving forward, pushing, and advocating for our right to receive it.

The small wins matter most. Seeing Mason comfortable, stable, and able to enjoy his day in his own home means everything to us.

How do you feel that Mason’s journey changed you as a person?

It has made me stronger and more patient than I ever imagined. It has given me the confidence to advocate for what my child needs and the courage never to take no for an answer when it comes to his care. It has also deepened my appreciation for truly compassionate nursing support.

Would you recommend White Glove Community Care to other families?

Yes and Yes. White Glove Community Care brings skilled nurses to the place where comfort, safety, and family count most. The nurses who provide the care become part of your family, and this is truly amazing. Our White Glove Nurse, Dorota, is amazing, and we love her dearly!

If you could speak to a parent just starting this journey, what would you tell them?

Homecare is not a luxury—it’s essential when you, as the parent, cannot meet your child’s medical needs. Nursing care can be life-changing. It provides stability, dignity, and support not just for the patient, but for the entire family. For medically complex children like Mason, private duty nursing is often the difference between simply managing and truly living. I don’t know what I would do without it!

And know that you are not asking for too much. Wanting safe, appropriate care for your child is not optional; it’s necessary. Trust your instincts, don’t be afraid to advocate, and don’t take no for an answer when it comes to your child’s health and safety.