The EBF3-HADDS Foundation was created to promote awareness, research, and support for a rare genetic syndrome discovered in 2016.

  • Grey Facebook Icon
  • Grey LinkedIn Icon
  • Grey Instagram Icon

© 2019 by EBF3 HADDS FOUNDATION 

Life's Surprises: A Grandparent's Perspective

By Ellen Duncan


As a mother, when your child tells you she is expecting her first baby, you are filled with joy and excitement. I was doubly blessed because both of my daughters were pregnant at the same time! How fun it was going to be

for my girls to have babies within a couple of months of each other.


The early months of my daughter Mallory’s first pregnancy were great. It wasn’t until month 7 that things took a turn. She wasn’t feeling herself. Her symptoms were intense headaches, swollen feet, pressure in her chest and sharp pains in her side. Her doctor seemed to think she needed some rest and sent her home with those words. But thank goodness Mallory listened to her body and made her way quickly back to the hospital.


At Walter Reed National Military Medical Center a different picture revealed itself. All her numbers were crazy! Blood pressure was through the roof, she had elevated liver enzymes and an extremely low platelet count. In a short time, her liver and other internal organs were shutting down. I was sitting in her room with her when a team of five doctors came in and announced that she had HELLP syndrome. HELLP is the most extreme form of pre-eclampsia and it required an immediate emergency c-section to be performed. My grandson was only 31 weeks.


Once our grandson, Grant, arrived and weighed just over 2 lbs. Mallory’s health slowly returned and as her fight was ending, Grant’s had just begun-- he was swiftly taken to the Neonatal ICU. He was so frail and with all the machines hooked up to him he looked even frailer and SO small!


Grant had a rough start in life, but with lots of prayers and many great people caring for him he gained strength and was able to go home from the NICU several months later. But something wasn’t quite right. He was failing to thrive, not meeting development goals and displayed early signs of Autism, but only time would tell.


The first two years of Grant’s life were in the hospital for UTIs, procedures, brain surgeries, MRIs, etc. Therapy began at all levels for our “little general”, the family nickname for Grant because he is a fighter. As a Nana (Grandma) I saw my little fellow go about things in his own way. After spending time with him, I learned what he could and could not do and worked with him as I saw his therapists do. Being able to sit in on some of his therapy sessions gave me knowledge and insight as how best to reach into Grant’s world.


Of course, Grant could not do the typical things some his age could, but I honestly believed early on that he recognized instinctively when someone was trying to enter his world. Love also breaks barriers in ways we humans can not describe! I would be sure to touch him and connect as we played our little games together. The human touch has been proven to be a source of healing. And sometimes I would just sit beside him while he was in his world and say nothing, but pray silently over him.

The evening of the diagnosis, Mallory immediately created a Facebook group in hopes of connecting with other HADDS families. Finding other families in the same “boat” so to speak, has been a comfort. When we are walking through life and someone can come along side of us, the burden does not seem as heavy even though nothing has changed.


Our family is so grateful to now know an answer to Grant’s health issues. Questions have been answered. Support has been given in SO many ways. HADDS families have reached out in love and understanding. Dr. Chao welcomed us into her research and under her watchful care-- her team are AMAZING with their support!


Life has some surprises for us, but with the surprises often comes awesome people! We know that Grant’s HADDS diagnosis has changed his life, as well as our family’s, but we are not alone. We are connected to some wonderful people, the HADDS community continues to grow and this warms a Nana’s heart!


Ellen Duncan- Grant Schindler's Nana & one of his cheerleaders





15 views