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10 Minutes With: Ann Zgorski

Meet Ann Zgorski, a mother of three children: Amy, Emily and Ben. Amy and Ben were both born with FoxG1, (the same rare genetic condition as Meredith the MTeam’s Chief Motivating Officer), though it took many years to find a diagnosis. Below, Ann tells us how her own life changed in many ways after her children were born, where her family found support and stories of the lives of each of her children.

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MTEAM: Tell us a bit about yourself. 
ANN ZGORSKI:
My name is Ann Zgorski and I live in the Baltimore Washington metropolitan area. I realized in answering this question that I’m not really the feature of my life; my children are. Ever since my first child Amy was born, it has been family first. My career with IBM came to a stop, my ability to be the social being I was became more difficult, and I needed to learn to reinvent who I was. Spending most of my time home certainly made me look around and say, ok, if I’m here, let’s make the most of it. So, to the delight of my family, I became a pretty accomplished cook! Lesson one, find the positives in the negatives. 

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MTEAM: What role has FoxG1 played in your life over the years?
AZ:
FoxG1 was not introduced into our world until Amy was 26, and Ben 22. For 26 years, we mottled through the world of seizures, gtubes, wheelchairs, IEPs, scoliosis surgeries, pulmonologists, gastroenterologists, etc.  Not having a diagnosis for all those years proved to be very difficult. We had NO BUBBLE TO FILL IN on the hundreds of forms we filled out. We couldn’t say “other”, because then they’d want a “write in”! Many services were restricted due to this...they didn’t know where to put us. So we kept on keeping on until May of 2013 when we got the call that there was a match (finally!)...FoxG1. We now could check “other”.  Lesson 2, don’t give up.

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MTEAM: Most of the FOXG1 families we speak with have younger children. At the age of 31, Amy is believed to be the oldest Fox in the US and Benjamin lived to be 25. That’s incredible. What sort of support and resources have you been able to lean on or access through the decades that may have assisted in their longevity?
AZ:
Yes, Amy is 31 and Ben was 25 when he passed away in 2016. Living in Maryland we had a very good school system that the kids attended until age 21. It was through this school that we found a support group, not only for me, but for my daughter Emily as well. The school psychologist would hold support groups monthly for the parents, but also in the evenings, once a month, she would hold support groups for the siblings of kids who attended this school. I wish that all schools could do this for not only the parents but for the siblings. It is very important to not feel alone as a parent or sibling of a disabled individual. 

It was also through this school that we found an individual willing to help us with respite for Amy and Ben so that my husband and I could have an occasional date, and go out with our daughter Emily. This too was very important to the upbringing of Emily, and of keeping our relationship as a couple, together. Support from family, friends and anyone in the community willing to help is certainly key to keeping normalcy in your life and the life of the others in the family.

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MTEAM: What have been some of your personal challenges and rewards along your journey as a mother so far?
AZ:
Obviously my biggest challenge as a mother was balancing two disabled children with all of their needs, along with the needs of my daughter Emily. I couldn’t have done it without the support of a very good husband and father to my children! On a personal level, another challenge would be also keeping up relationships with friends who don’t quite understand the demands that your family has on you.

My reward has been seeing Amy grow into a healthy and happy little girl. Even though she is 31, she still my little girl who we put to bed every night! My daughter Emily has been my pride and joy! To see her accomplish so much, and grow into a beautiful human being both inside and out, and to choose a profession that helps others....I’m so, so proud!

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MTEAM: Tell us a bit more about Amy! What does she love most? What makes her happy? What makes her uniquely Amy?
AZ:
As I said earlier, Amy is 31-years-old and lives home with her mom and dad. She has the ability of a 3 to 6-month-old and requires total care in every aspect of life. She is Gtube fed,  but also takes puréed food orally. We personally bathe and dress her and take care of all her personal hygiene needs. 

What makes Amy unique is her love for life!  She is the happiest little girl in the world! All Amy wants in life is to be loved, and to be involved in the activities of your life. She loves music, and I have to admit,  she loves the men in her life!

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MTEAM: What’s a typical day in Amy’s life like these days?
AZ:
A typical day in Amy‘s life is her attending an adult day care program where she swims and is involved in arts and crafts with one-on-one help. She plays games and enjoys the activities around her. She has friends at her program and is happy to attend her program daily. She comes home to us at night and has dinner, gets bathed, and hangs out with her family until it’s time for bed.

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MTEAM: Your middle daughter Emily is a sibling of two Foxes! Tell us a bit about her. What were some of the challenges for her as she was growing up? What have been the most positive aspects of her experience? How has it impacted her life generally?
AZ:
Our middle daughter Emily is now 29, married, and is a pediatric nurse practitioner. As parents, we always tried to make Emily feel special, in a home where her other two siblings took up the majority of our time and energy. Weekly, as much as possible, we took Emily on a “date” ....dinner out with mom and dad, that gave us all the opportunity to listen and stay connected to her world. We always emphasized to her that her siblings were not her responsibility, and that her responsibility was to do well in school and to have fun along the way! Emily did do well in school, and attended undergrad and graduate school at Vanderbilt university, earning her masters as a nurse practitioner. We could not be more proud that she chose to become a pediatric nurse practitioner! Her siblings taught her compassion, empathy, selflessness, awareness, and so many other great qualities. But above all, they taught her to Love!

Ben’s passing two years ago was one of the hardest moments as a family. We knew his respiratory issues had become his downfall, but his passing, none the less, caught us off guard! Emily insisted on delivering the eulogy for her brother’s funeral. There wasn’t a dry eye in the church and I couldn’t have been any prouder as her mom. I hope you get to know her perspective in the future.

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MTEAM: Tell us about Ben, what he was like growing up, what made him happy throughout his life and what qualities made him uniquely Ben.
AZ:
Handsome Benjamin was 25 when he passed away, on Amy‘s 29th birthday. He struggled for many years with seizures, respiratory issues and the obvious pain that was always difficult to diagnose. We tried to make him comfortable, but he rarely slept and was home sick a lot. A simple cold could keep him home for 10 days. He had an infectious laugh when he felt well. And you knew, he really just wanted to be happy. It broke my heart not to be able to make him comfortable in life.

So with his death, I could find comfort in knowing he was no longer in pain, and that it was finally at peace and with our God. I find myself more comfortable with my own mortality knowing that I will be with Ben again someday!

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MTEAM: If there was one thing you’d most like the world to know or understand about Amy, Ben or about FoxG1 generally, what would it be?
AZ:
FoxG1 is a rare genetic disorder,  and yet in its rarity, there is a huge spectrum of ability amongst the community of children within this syndrome. I believe Amy and Ben are on the severe end of the spectrum. There are FoxG1 children who can walk and communicate, which is an amazing thing for me to imagine.

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MTEAM: What key changes would make this a more inclusive world for people with FOXG1?
AZ:
Inclusiveness should be the goal of every person regardless of the bubble that they can, or cannot, fill in.

Candyce Carragher