Nelson's Story

Mary’s ALGS Story

Meet Mary!

“Every heart breaks so it can let more light in”   This was especially true for me last year. On January 31st, 2017, my sweet sister Mary collapsed and lost consciousness while at school. She was in a place she loved with her favorite teacher, Ms. Bynum. I think this was fate.

The next 3 days were hell-ish. Mary had suffered a ruptured aneurysm, was unable to recover, and passed away peacefully on February 3rd, 2017. I could not process what had happened to my sister, my only sister. Mary, whom I admired so deeply and looked up to more than anyone, my greatest inspiration, was gone.

Mary was a “Warrior”. She fought her entire life to overcome ALGS and endured more than anyone her age should. Diagnosed at 2 months old, her ALGS came with pulmonary stenosis, developmental issues, Moya Moya, liver disease, and more. Her continued bad health did not allow for liver transplant evaluation. She was very itchy, extremely fatigued, and had a history of strokes that she was unable to recover from and lost all ability to use her left hand after the 2nd stroke. In 2015, Mary had a spinal hematoma and underwent a 10-hour surgery.  Her “Warrior” battle continued.

Even in difficult moments, Mary won the hearts of all her nurses and caregivers. Strong will and courage helped her press on, never letting any of this get her down. Despite not having fully understood why she was different, smaller than her peers, or why she couldn’t use her left hand, Mary lived life so fully. Her heart was gold. Her smile could light up a whole room.

After Mary passed, our family was overwhelmed by the kindnesses given. Mary’s celebration of life service brought friends from all stages of her journey. Pediatricians, physical therapists, school teachers, and even strangers who had met Mary at the grocery store all attended. Upon our request, all attendees wore brightly colored clothing to remember the joy Mary brought in life.  Mary’s school started a scholarship fund in her honor, created bracelets that said “Be Merry for Mary” and installed a memorial bench in her honor.

With the help of the ALGSA, we were able to donate Mary’s liver to the Children’s Hospital of Philadelphia (CHOP) for ALGS research. Mary’s middle school started a scholarship fund in her honor and our family will award the first scholarship to a deserving high school senior graduating in 2021. Our hearts will always ache and long for Mary but it’s touching to know that Mary’s legacy and memory will live on in these ways. I am so incredibly honored to be Mary’s sister and I will always cherish the sweet and special bond we shared together.

An excerpt from speech I gave at Mary’s celebration of life service:

“Mary’s legacy will abide within all of us, in the moments we choose courage in the face of obstacles, in the moments we choose joy regardless of our circumstances, in the moments we choose compassion over judgment. May we all live as freely as Mary, sharing smiles, laughter, and love in abundance. Having gratitude for every blessing. Creating happiness in every way possible. Having eyes that find beauty in the small places and the good in all people.”

– Mary’s Sister, Sara

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