Stacy’s Story

“Stacy loves every minute of her day and comes home laughing,
smiling and singing…”

Stacy Lynn VanHerreweghe, Rochester, NY, Trisomy 18, 5/21/1981

Update: Stacy is now 34 years old. She is still enjoying life to the fullest. She attends a day program daily and volunteers out in the community. She is so very happy and we enjoy every moment we have with her. Stacy lives at home with her Dad and mom. On June 20th, she will be a bridesmaid in her brother Andy’s wedding. Pictures to come soon. Stacy loves traveling and especially cruises. Show this girl a palm tree and she is all smiles.

Stacy had major surgery 9 years ago as she had what they thought was an intestinal blockage. It ended up that part of her intestines was over expanded and needed to be removed. She now has an ileostomy, and since her recovery has been healthy except for when a stomach bug hits her – she generally needs IV’s a few days due to the ileostomy.

Stacy loves life and her entire family, extended family and friends.

Original story: We were told the child we so desperately waited for had already outlived her life expectancy! How could this be? Not our beautiful baby! They sent us home to let her die. The days turned in to weeks, the weeks to months and here we are at 30 years old. So much for being incompatible with life. Our life however, changed. We waited back then for Stacy to die. She obviously had her own ideas. She also never read the medical books. Stacy was born with a PDA and many of the physical features that are part of Trisomy 18. The first five years were difficult. Stacy had many bouts of pneumonia. It took me all day long to get her to eat. There were many long days and many tears shed in those first years. We chose to have a g-tube surgery done when she was 5 years old and still only 19 pounds. Stacy gained almost 10 pounds in the first month. She got healthier and life continued on. We still feed her by mouth first. She enjoys what we call the “white food” group: mashed potatoes, tapioca pudding and whip cream. We can even throw in some butternut squash and different gravies and she loves them all. There was no internet back then so we waited to get our SOFT newsletter every few months and to learn from other families. They were our best line of hope and ideas. Of course all ideas had to be reviewed with her doctors to make sure they would work for Stacy in her circumstance. We started attending the SOFT conference yearly and it was so helpful. We learned at the clinics at the workshops and from talking with other families. As one friend put it, it is like going to a family reunion that you really want to attend. Year after year the conference has become our family vacation and extended family reunion.

Stacy started with Early Intervention services when she was very young. She started school when she was 6 1/2 years old. Over protective mom that I was, I took her back and forth to school. We soon learned that Stacy loved it. We were very careful when she started by making sure that she used her own toys and they were washed weekly to protect her from germs. We were contacted if anyone got sick in the classroom so we could make sure that we could bring her home if we were concerned. The school worked with us and Stacy benefited from her experiences. I gave in and sent her on the bus. That was hard, not for Stacy just for me. We had protected her for so long. Stacy attended several different schools until she was 21 years old. She had small jobs in the school the last few years so she could prepare for the adult world! She helped in the school office with her 1:1 aide. They sorted the mail and made copies for the teachers. As always Stacy became the center of attention and loved every minute of it! What were we going to do after school? How scary! Well as always we made it through! Stacy attends a day habilitation program at Lifetime Assistance in Rochester, New York. Her 1:1 aide at BOCES left with her and for the first years at Lifetime she was with Stacy and helped others to understand Stacy and what she could do. Stacy goes out everyday while at her program and makes choices of which volunteer job she will participate in. Her aid assists her and a nurse feeds her through the gtube at lunch time. Stacy loves every minute of her day and comes home laughing and smiling and singing every day. To Stacy Life is Good!

We were so lucky to celebrate her 30th birthday this year! We called it a wedding without a groom (although her boyfriend Jason was there) She had over 150 guests, Drs, nurses, teachers, therapists family and friends. She danced to her country music the DJ played, cut her cake and enjoyed the frosting and loved every minute of this glorious day! Life is good, challenging some days but GOOD!

If you are new to this journey please realize that Stacy’s age is not the norm, but there is hope and life for us has been a true joy every minute we get to spend with Stacy!