In Memory of Emmett Jordan Nguyen

Thank you to everyone for visiting this page… it has been six months since Emmett passed away, and we wanted a place where we could share pictures, videos and memories of him.

We appreciate any and all words you may have to share about what you remember about Emmett, how he may’ve touched your life or simply share prayers for him.

Remembering Emmett (Video: 11 minutes)

We created this video to help us remember some of the special moments in his life. It includes videos from other PIGA-CDG families and the researchers working toward a PIGA-CDG cure. Thanks so much to everyone who submitted a video for us to share.

Our Eulogy (Video: 3:35 minutes)

Words from Debra (Emmett’s Physical Therapist, Video: 4:29 minutes)

Words from Kaitlyn (Emmett’s Speech Therapist):

Emmett without a doubt made a profound impact and I will look back on all the memories I share with both Emmett and your family.

Some favorite memories of mine were watching him light up when Via came to play with us and how he so very much enjoyed her presence. The day the chair came and we could finally sit face to face comfortably and play with toys together was such a fantastic time and I’m so glad that I got to have that experience with him. I loved playing with the squishy toys, light up wand, and playdough with him. The joy was so clear and it made me so happy any time I could identify something new that made him smile. Because really, at the end of the day, bringing joyful moments is what communication is all about at its most basic level… his smile said it all.

And to you and Steve, and your Mom, thank you so much for consistently welcoming me into your home, on the good days and the not so good. It is truly a pleasure to know you and to have seen your work within the PIGA community. You set the bar for watching for signs and little moments of communication that I always encourage my clients to do. You could intuitively know what E might be needing or experiencing and find a way to help him. 

So thank you, thank you for making me a part of E’s team and welcoming me, always. Wishing you and Steve and Via all the happiness and light. 

Words from Dr. Sandesara (Palliative Care, UCLA):

Dear Emmett, 

I will never forget the first time I met you. You were in the ICU, eyes open, comfortable, adorable. Your mom was doting at your bedside, and I pulled up a chair next to her, talking all about you and getting to know the wonderful person you are. By the time I met you, your path had not been easy, but in that, you showed me your patience, your resilience, and great strengths.  

You and your parents were one of the most incredible teams I have seen. When I asked your mom to tell me more about your unique history, she gave me a typed and organized ten page document telling me about your life month by month since you were born.  When I asked your dad about your medical plan, he was talking to doctors and scientists across this country about how special you are. Your touching story connected people across the world and still does. You are loved more than you probably will ever understand, with your parents going to the ends of the earth to make sure you had every possibility this world could offer, and alongside, you loved back unconditionally and powerfully. You were the star of the team, constantly motivating all of us, from the doctors to the nurses to the therapists and more, as you did the heaviest of all the lifting in some of the scariest places, brave and determined.  

The last time I saw you, you were quiet, calm, feeling the warmth of your mom and dad on either side of you, with your stuffed turtle friend held close, and your baby sister and relatives sending their love from outside. Emmett, the months have passed in a life that in many ways looks quite different from the one you last knew, but we miss you the same. We think about you often, and always will. We hope you are well and at peace, continuing to inspire us and guide us. We thank you and your family for allowing us to be a part of your journey, one that we hold dearly forever.  

Dr. Sandesara 

Words from Gina (Palliative Care, UCLA, Video: 3:11 minutes)

A Tribute from the Palliative Team, UCLA (Video: 2:03 minutes)

(The tribute highlights a song by Jenna, a Music Therapist for UCLA. The heartbeat you hear is actually Emmett’s heartbeat… they captured it during one of our last times with him outside.)

Words from Alisha (Child Life Specialist, UCLA):

I had the opportunity to meet and work with Emmett and his parents as his Child Life Specialist whenever he was admitted to the hospital. I remember and appreciate the dedication, care and love that Steve and Ann always exhibited to Emmett. Emmett and his family were so kind to our Child Life Department and regularly gave back to us, whether it was for one of Emmett’s birthdays, a holiday or a just thinking of you. The toys and items for other hospitalized children were greatly appreciated and utilized. During Emmett’s final admission it was beautiful to have Emmett, Steve and Ann outside. Emmett seemed calm, comfortable, and appeared to enjoy the sun, fresh air and change of environment/scenery. He and his family will always hold a special place in my heart and that of Child Life.

Words from Alice (9 years old, family friend, Video: 3:23 minutes)

Words from Andrew (Family Friend):

Steve is one of my oldest friends. Prior to Emmett being born, I was never a “baby person” and I had no nieces or nephews amongst my immediate family or closest friends. Emmett was different. I distinctly remember holding him for the first time and feeling that this wasn’t just another baby, this was a new family member.

When Emmett was first diagnosed with PIGA-CDG, I did some initial research on the disease to figure out potential treatment paths. Over the years, I worked with Steve and Ann to find researchers that could create and test potential therapies for PIGA-CDG. Throughout that time, Emmett inspired all of us to keep going through showing his willingness to continue fighting, braving physical therapy and regular trips to the ICU. I fondly remember the times when I’d come over Steve and Ann’s place and Emmett was in a good mood. He had a smile that would light up the room and great mane of thick black hair with his daddy’s kind eyes.

On my way to visit Emmett for the last time in the hospital, I stopped by a children’s toy store to pick out something for him. While browsing the shelves, a friendly woman came to ask me if I needed help. I mentioned to her that I was visiting my friend’s son in the hospital and I just wanted something that would make him feel comfortable. At that moment, much to the shock of the nice employee and myself, I burst out sobbing uncontrollably at which point the panicked employee looked left and right, blurted “uh, uh, let me get you some water!” and ran to the back of the store. Of course, I was heartbroken given the situation, but as I’m one of the least emotional people I know, I spent a lot of time afterwards thinking about why I reacted so strongly at that particular moment. I came to the conclusion that my reaction was based on 1) the poor selection of stuffed animals for boys at that particular store, 2) the feeling of having failed Emmett, and 3) most of all, an overwhelming sense of wrongness and injustice. Looking at my own 2 year old son, seeing how innocent and small he is, then thinking of any little child having to brave mental and physical suffering in a fight for their lives—it just felt so wrong.

Since Emmett’s passing, I’ve thought often about what kind of boy, and eventually man, Emmett would have been if PIGA-CDG didn’t exist. It’s impossible to be certain, but being the son of Steve and Ann, there are certain things that I am 99% sure would have been a part of Emmett’s personality. First, I am sure he would have his dad’s sharp wit and sense of humor. Second, I am sure he would have had his mom’s strength and determination. Third, I am sure he would have had his parents’ empathy and compassion. After Emmett’s passing, Steve and Ann made the choice to continue trying to help other children with PIGA-CDG through progressing research and educating parents. It’s not an easy decision and one that I am humbled by. Lastly, and perhaps most certainly, he would have been a Lakers fan.

To my lil nephew/buddy Emmett, I’m sorry we didn’t get to spend more time together and I didn’t have the opportunity to share my obsession about cars (excluding those Jeeps your dad likes for some reason I can’t understand). I’m glad I met you, and you’ve made me a better person. I’ll keep an eye out for your Mom and Dad so don’t worry.

This is the original program we had created for the service. I wanted to share it, in particular for the excerpt on the back page. It’s from Wonder, by R.J. Palacio. It’s about a boy named Auggie who has a genetic mutation that impacts his physical appearance, but the book talks about how that impacts his life and everyone around him. Emmett was dealt an unfair card with his disease and all the health issues he had from it. But we hope that – in the slightest bit – the universe was trying to balance it all out by giving him to us and the village that we have and grew because of him. This book was deeply moving – so much so, that we actually nicknamed Via after Auggie’s sister. We’d highly recommend it for anyone looking for an insightful, feel-good book.

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Finally… many people have asked us how they can help, or where they might be able to donate money to. In Emmett’s name and for his legacy, we continue our fight to find a treatment for PIGA-CDG so that children born with PIGA-CDG may grow to live healthy, fulfilling lives. We appreciate any donations to CDG Care for PIGA research. You can put “In Memory of Emmett.” Details on how to submit a donation can be found here: https://piga-cdg.org/donate/.