Stacy L. VanHerreweghe



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Stacy L. VanHerreweghe Rochester: May 21, 1981-April 29, 2018 shy of her 37th birthday was born with Triomy 18 being the second oldest survivor in the U.S. She is survived by her loving parents, David and Barbara VanHerreweghe; devoted brother, Andrew (Melissa) VanHerreweghe; Aunts, Sheila (Robert) Reynolds, Valerie (Donald) Krieg; nieces, Andrea & Nicole;cousins, Mike, Pete, Christine, Keith, Cory, Cassie; special long time friends, Judie Laird & Carrie Wies; devoted nurses, Judie, Lakeaya, Shonda, Octavia, Shana, Theresa & Shade; loving family and many dear friends. Stacy was an inspiration to all and taught so many people on how to be a fighter and never give up. Her beautiful smile will never be forgotten. She will be deeply missed by all who knew her. Stacy’s visitation will be held Saturday, May 5th 12-3 PM at Vay-Schleich & Meeson 1075 Long Pond Rd. where her celebration of life will be held at 3:00 PM. Contributions may be made to Support Organization for Trisomy 18, 13 and Other Related Disorders in her memory / For more information and to sign her online guestbook, visit Those attending the service to honor Stacy’s love for Victoria’s Secret Pink, wear yours!


  1. Jennifer Davis on May 1, 2018 at 12:00 am

    Dave, Barb, Andy, and all of Stacys extended family, Im so saddened to hear of Stacys passing. Im happy to have had the pleasure to know her. She was loved so greatly by you and she touched so many lives. My heart goes out to you as you grieve her loss. I will forever remember her sweet smile and hand holding. Heaven gained a beautiful angel.

  2. Amanda Fleig on May 1, 2018 at 12:00 am

    I am so sorry for your loss. Stacy was and still is an inspiration for all♥️ Love and prayers sent your way.

  3. Allen LaBeth on May 1, 2018 at 12:00 am

    I never had the honor of meeting Stacy or her family in person, but when we got the Trisomy 13 diagnosis for my son 13 years ago we reached out and Barb answered. Thank you for sharing your beautiful wonderful daughter with us. She was and still is an inspiration. May God wrap you in his loving arms.

  4. Joyce tomkiewicz on May 1, 2018 at 12:00 am

    Love and prayers for your FAMILY

  5. Annette Porcha (Octavia's Mom) on May 1, 2018 at 12:00 am

    My deepest condolences to you and your family during your time of bereavement..May God Bless you and keep you .. God has gained another Angel may your soul rest in peace is

  6. Cindy & Kimmie Miller on May 1, 2018 at 12:00 am

    Stacey when we needed inspiration you were there thank you. You showed us what Kimmie T13 m can do when we started our journey. She’s 30 and we will always think of you and what you showed us. You will forever be our star.

  7. Kelly Fournier on May 1, 2018 at 12:00 am

    Stacy, you inspired the world. You gave us hope. When we found you and SOFT in 1998, it was the lifeline that we needed. Sloane will forever be in your debt for showing us how to fight!!

  8. Beverly Mah on May 1, 2018 at 12:00 am

    Stacy, you made our lives better and inspired many of us into different directions. I never thought this day would come as you have overcome so much. Your life touched all of us and we all saw ourselves in you. We will love you forever wherever you are but always in our hearts. Barb, Dave, Andy, and family, you gave us so much in Stacy and support to all of us. We are with you. Much love, Bev, Ron, and Sarah (Calgary).

  9. John & Cathy Patch on May 1, 2018 at 12:00 am

    Such a shock to hear of Stacy’s passing. In the world of Trisomy 18 children, she was such an inspiration to us all, the parent’s of Trisomy 18 children and her brother’s and sister’s of Trisomy 18 children. God bless.

  10. Bonnie & Bill Henshaw on May 1, 2018 at 12:00 am

    We where so saddened by the loss of your precious daughter, Stacy. She will be looking down from above with her wings watching over all of you. May you all be in the hands of our sweet Lord to help guide you through this difficult time. You all will be in my prayers.

  11. Juan & Debbie Hernandez on May 2, 2018 at 12:00 am

    Andy & Family Our prayers are with you and your family so sorry for your loss.

  12. Robin Krommendyk on May 2, 2018 at 12:00 am

    Barb and Dave our hearts go out to you during this time. I will never forget the first time that I met Stacy back in 1996 she gave our family inspiration and hope as we were just beginning to embark upon our life with our daughter Karah who also had Trisomy 18 The Krommendyk / Thompson Family

  13. Kevin and Barb Kepler on May 2, 2018 at 12:00 am

    Looking at pictures over the years and never having met you but listening to your aunt Val you were a great fighter! Bless your heart for being on this earth as long as you were. And so glad you gave joy and happiness to those who truly loved you! God bless you and your entire family!

  14. Sarah Adwyeye on May 2, 2018 at 12:00 am

    Stacy we her in TX are still in shock that you are gone! We enjoyed visiting with you last in 2011 at the conference in Chicago. You are with Jesus now and he will take care of your family. Praying for strength for you all. God bless.

  15. Christine Werner (Donohue) on May 2, 2018 at 12:00 am

    Stacy’s beautiful singing voice was the first voice of hope I heard over the phone while pregnant with my special baby Mary way back in 1996. Throughout my journey with trisomy 18, it was YOU that I looked to as the guiding light to cope with all the challenges. I’ve been so long in awe of your life and the extraordinary care given by your family. To Barb, Dave, Andy, and all the wonderful people who have been so involved all these years, I wish you strength and peace as you cope with the emptiness you will all feel. Stacy fought the good fight, she has finished her race! Much love to you all!

  16. Agnes Laird on May 2, 2018 at 12:00 am

    We will remember Stacy’s beautiful smile and the joy she brought to everyone who knew her. We will miss her terribly and are so sad to say goodbye. Much love, Martin, Agnes, Elsie and Onnolee Laird

  17. James LoTempio on May 2, 2018 at 12:00 am

    You guys did a great job with her. There will be a lot to remember, I hope you get to cherish those gifts and continue to pass along all that you have learned with her.

  18. Dennis and Kim Fantauzzo on May 3, 2018 at 12:00 am

    Barb, Dave, and family, Dennis and I were saddened to hear that Stacy has gone to heaven. I remember meeting her at a Christmas Party that our family attended with other families that had children with special needs. I remember her smile. I know for a fact that Stacy is rejoicing in heaven. We pray that the peace that passes all understanding will comfort you in the days, weeks and years to come. I know that Stacy was blessed to have you for her family, but I know that your family was the real recipient of the many blessings and joy she brought to your lives. Stacy mattered and Stacy made a difference and her legacy will continue to live on through all of your family.

  19. Russ, Lisa, Devon, Drew, Mikiya, Mistalyn, Jaslyn, Chailyn, Denver, Evelyn, Duke AND Saralyn (11-2015 to 2-2017) Kenyon on May 3, 2018 at 12:00 am

    Stacy, you are and will always be a beacon of hope and love. You are an amazing spirit, and we were all blessed by you. You and your family were the light at the end of the dark hallway of the NICU, sharing so much needed information and love.

  20. Bruce, Michelle, Ryan and Katie Whitmarsh on May 3, 2018 at 12:00 am

    Stacy’s life is a beacon of hope for so many people. Her diagnosis was the catalyst for so many great things. Stacy’s strength will continue to inspire others for years to come. She ignited a flame that would expose all the earthly angels who reached out and touched so many hearts. Words could never express the gratitude for having known her and all the angels around her. So sorry for the family’s loss. Our hearts ache with you. ❤️

  21. Cheryl Krueger on May 4, 2018 at 12:00 am

    I’m sorry to hear of Stacey’s passing. I am the mom of Kaylea Krueger T18 1989-99 and I remember you and Stacey from many years ago through SOFT newsletters and conferences. God be near you and bring you comfort one day at a time. Stacey will never be forgotten. I am grateful for all her life has contributed.

  22. Darlene Domanski on May 4, 2018 at 12:00 am

    May God’s loving peace and strength embrace you and your family. We met Stacy and you Barb at the S.O.F.T conference in Baltimore. in 1991 with our Sarah. ❤️

  23. michelle streicher on May 4, 2018 at 12:00 am

    My deepest condolences during this difficult time. You are all in my prayers.

  24. Lois Helfer on May 4, 2018 at 12:00 am

    Stacy’s life was such a blessing to so many people. I am so sorry to hear about her passsing. Her smile was magical. Her family was devoted to her, and always fought for her rights, her treatment, and how to help others. I hope that with each passing day the family will heal. You memories with her were priceless, and she will be missed.

  25. The Mattison family on May 4, 2018 at 12:00 am

    Words can’t express how sorry we are about Stacy’s passing.

  26. Brian Phillips on May 5, 2018 at 12:00 am

    Dave, I am so sorry for your loss.

  27. Annabelle on May 5, 2018 at 12:00 am

    I saw Stacey’s Mom on 13 Wham news this evening. What an inspiration! A beautiful story about the dignity of life, sacrificial love and heroic patience. Thank you for this beautiful example of what it means to take care of someone you love. RIP Stacey.

  28. Mark Jacobs on May 5, 2018 at 12:00 am

    So sorry for your loss.

  29. Barbara Lelis (Lange) on May 6, 2018 at 12:00 am

    Oh my gosh! I can hardly believe it. Stacy was an inspiration to everyone. I’m happy I had the opportunity to be one of her nurses. God Bless

  30. Melissa MacDowell on May 6, 2018 at 12:00 am

    So sorry to hear about Stacy’s passing! We met her a few times as we lived near Christine and Adam when they lived in Cdga. Prayers to your family!

  31. Phyllis Wickerham on May 24, 2018 at 12:00 am

    Dear Barb and family, We are so very sorry to hear if Stacy’s passing. Please know that our thoughts and prayers are with you. Sincerely, Tom & Phyllis Wickerham

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