<div>On Christmas Eve 2025, Justin and I began living every parent’s worst nightmare. We received the most devastating news: our 13.5 month old daughter, Isabelle (Izzy), was diagnosed with Acute Necrotizing Encephalopathy (ANE). ANE is an extremely rare and severe neurological condition that causes widespread inflammation and permanent injury to the brain. We were told she might not survive the next few days. Against overwhelming odds, Izzy did survive, but her long road to recovery is only just beginning.
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<div>How Our World Changed
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<div>It started on December 23, 2025, when Izzy caught the flu and was admitted to BC Children’s Hospital due to concerns about dehydration. About 10 hours into our emergency room visit, Izzy became increasingly unresponsive, no longer waking to her name, sounds, or physical stimulus. After hours of monitoring, doctors ordered an emergency CT scan, which revealed significant swelling in her brain. They immediately started high dose medications to combat the pressure.
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<div>The next morning, Christmas Eve, an MRI confirmed our worst fears: Izzy had ANE. A condition so rare only a handful of cases are reported each year across Canada.
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<div>In an instant, our world stopped. Instead of opening presents at home with both of our children, we sat by Izzy’s hospital bed, listening to doctors explain a grim diagnosis and wondering if our little girl would live. That initial shock, helplessness, and grief were overwhelming.
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<div>Through those excruciating three months in the hospital, our 3 year old son showed courage far beyond his years. Through all the big feelings of “When is Izzy coming home?” and “I just want my family to be together,” it was a lot for a toddler to grasp but he understood that we all couldn’t be together until the doctors got Izzys medicine right. Enduring his little sister’s (who he affectionately calls his mui mui) extended hospital stay with patience and love, he became a quiet pillar of strength for our family when we needed it most. Between Justin and I, we were always single parenting each child. We only ever saw each other in passing either in the mornings or evenings, giving brief report of our days or nights and then carrying on because we had to. Between working reduced hours and being at the hospital, Justin as he says “is the least important” between the 4 of us. But in reality, he has carried so much of the emotional weight for our family like helping manage everyone’s fears, feelings, and needs while still continuing to show up for work, keep our home running, and make sure the kids and I were okay. He has somehow continued to carry the responsibilities of everyday life while carrying all of us, even when there was very little left for himself.
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<div>Defying the Odds
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<div>ANE took away every developmental skill Izzy had worked so hard to achieve during her first year of life. Her favorite things were to dance to music, sit and read books and chase her brother around the house. And she had lost all ability to do all these things. She lost all her gross motor (such as rolling, sitting, crawling, standing and walking) and fine motor (such as holding objects with her hands, picking up things by pinching, flipping pages of a book and self-feeding) abilities. Izzy was practically a newborn again. Today, through sheer determination, she has relearned how to roll and eat foods, but she cannot yet sit independently, crawl, stand, or walk without assistance. Every movement and every small victory requires immense effort and endless hours of therapy.
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<div>Yet, despite the severity of her brain injury, Izzy continues to amaze her medical team and therapists with her resilience. We don’t know what her ultimate potential or "ceiling" will be, and because of that, we refuse to stop fighting for every opportunity to help her reach it.
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<div>The first two years following a pediatric brain injury are the most critical due to neuroplasticity, which is the brain’s unique ability to heal, adapt, and build new neural pathways to bypass damaged areas. Intensive therapy during this narrow window gives her the absolute best chance to regain function and build a foundation for her future.
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<div>Why We Need Your Support
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<div>While we are deeply grateful to live in Canada, where much of Izzy’s acute medical care was covered. The long term specialized therapies, adaptive equipment, and intensive programs necessary for her full recovery are either only partially funded or not covered at all.
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<div>We are endlessly thankful for the amazing team at BC Children's Hospital who helped us get this far. The dedicated doctors, nurses, and therapists saved Izzy’s life and supported our family through our darkest days. However, as wonderful as her hospital care team has been, we have now reached the limit of what the public healthcare system can provide. By the end of September, her hospital based therapy will drop significantly from intensive 2 hour daily sessions down to just 3 one hour visits a week over the next several months. The responsibility of maintaining the high intensity rehab Izzy needs during this critical neuroplasticity window will now rest on our shoulders.
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<div>As physiotherapists, Justin and I have dedicated our lives to helping others. We’re so grateful that we of all people understand Izzys impairments and what we need to do to help her get to where she needs to be. We also completely understand how hard it is to ask for help, especially since a lot of our patients play the wait and see game before coming in to see a physiotherapist. But in our current scenario, we can’t just “wait and see” because of Izzy’s neuroplastic window. Since Izzy became ill, I have been unable to return to work following my maternity leave. I am now Izzy’s full time caregiver, coordinating her daily medical appointments, managing home therapies, and overseeing her complex rehabilitation. At this point in time, returning to work remains uncertain despite my love and passion for my work. Izzy has become my job, both as a mother and a therapist.
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<div>Our goal for this campaign is to build a sustained safety net that covers Izzy’s ongoing out of pocket recovery expenses, including:
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<div>• Ongoing Intensive Therapies: Essential private sessions for Physiotherapy (PT), Occupational Therapy (OT), and Speech Language Pathology (SLP) to fill the gap and work on movement, communication, feeding, and independence.
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<div>• Specialized and Home Equipment: Adaptive seating, orthotics, custom footwear, mobility tools, and home therapeutic devices recommended by her care team (such as low level laser therapy equipment (approx. 15K), braces, a vibration plate (approx. 3K), and NMES units).
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<div>• Intensive Rehabilitation Programs: Building a dedicated fund so that when specialized opportunities arise, such as the two week pediatric intensive program in North Carolina using Dynamic Movement Intervention (DMI) that we previously had to decline due to short notice travel for the 4 of us and accommodation costs (approx. 12K), we can say "yes" without hesitation.
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<div>How You Can Help
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<div>Every contribution, no matter the size, directly fuels Izzy’s daily rehabilitation and opens doors to treatments that can reshape her future.
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<div>(If you would prefer to contribute by other means, please reach out to us directly.)
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<div>If you are unable to donate at this time, sharing Izzy’s story with your family, friends, and community is just as valuable. Every share helps us reach people who can help, and reminds us that we are not walking this journey alone.
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<div>We plan to post regular updates here so you can celebrate her milestones alongside us. Every new movement, every breakthrough, and, someday, every crawl and step will be a victory shared with all of you.
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<div>From the bottom of our hearts, thank you for believing in Izzy, cheering her on, and giving our daughter the best possible chance to continue defying the odds. We don't know what tomorrow will bring, but we know that with love, determination, and the support of an incredible community, Izzy will never face this journey alone.
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<div>Follow along for more recent updates on Instagram: xamwong (<a href="https://www.instagram.com/xamwong/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.instagram.com/xamwong/</a>)
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Support Isabelle's Journey to give her the Best Chance

Support Isabelle's Journey to give her the Best Chance

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