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In Loving Memory of This Treasured
Trisomy 13 Child

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Faith Anne Van Steyn

born August 8th at 4:59 and born into heaven August 8th at 5:45 am

  Elk Grove, California (CA) Trisomy 13 with severe holoprosencephaly, proboscis & cyclopia

Read Newspaper Article : A gift to cherish
Baby Faith never left the hospital. But Tamara Scott's photographs give grieving parents a life to remember
By Anita Creamer -- Bee Columnist


"We do not see this as the death of our baby girl, but new eternal life.  We brought her into this world to meet our little angel and give her kisses as we sent her to our father in heaven."

August 13, 2006
As Faith’s parents and brother, Mike, Garrett and I in a private moment alone with God will spread the ashes of baby Faith as a symbol and memorial of her new eternal life in heaven. We will lay to rest her ashes in a place very near and dear to our hearts and our home, in the Rose Garden where we were married. It is where we started our lives together as husband and wife and became a family and now it will be a place to visit as a family as Faith’s daddy, mommy and big brother here on earth.

We do not see this as the death of our baby girl, but new eternal life.  We brought her into this world to meet our little angel and give her kisses as we sent her to our father in heaven. She was here a precious 37 weeks and 46 minutes and was loved enough for a lifetime. Some may ask us, “Was she worth it?” And we say yes, she is our daughter and a part of us forever. I ask any parent that at the exact moment your new child is placed in your arms, “Were they worth it?” Whether our Faith was here on earth 46 minutes or 46 years, the moment God gave us our precious gift we were her parents for eternity. We do miss her so very much and no amount of preparation can truly prepare for the emotions. But as parents we want the very best for our children and that is to live a good life here on earth and one day go to heaven. Baby Faith was loved by so many near and far and touched so many lives in her short time here and is now an Angel in Heaven watching over all those who prayed for her and her daddy and mommy.

For you created my inmost being; you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.  Psalm 139:13-16 
 
We would like to celebrate the life of our precious daughter Faith Anne Van Steyn born August 8th at 4:59 and born into heaven August 8th at 5:45 am. We will never live with, “What would she have been?” her life here was exactly as ordained by God before she was ever conceived.

We had a celebration with a potluck luncheon with appetizers, finger foods and desserts on Sunday August 20th in our home to share in the life Faith had here on earth and shout praises for her new life in heaven.  
 
Thank you to everyone for your thoughts, prayers, caring, compassion and the meals, cards, phone calls, e-mails, flowers and gifts. Thank you for understanding our need for time alone in healing and grieving. Although you may have not heard from me or I was sleeping during your visits, we have been touched with tearful gratitude the love of so many God has placed in our lives so that we do not have to bear these emotions alone.
 
In Christ’s Love and Many Blessings,
Mike, Jackie, Garrett and Baby Faith in heaven
tojvs-faithannevs@yahoo.com
 

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August 9, 2006
To our family and friends,  It is too early to work out and express the emotions we are feeling... I did, however, want to send out a short update to let you know our Faith Anne is a special little girl and was a fighter. She was born alive and we were able to meet her and send her to heaven just as we had prayed for. She was 4lbs 9 oz and 18 inches long. Our Pastor was at the hospital in a moment's notice at 4:30 am in the morning to be there for us and our baby girl in
this very special and important moment, and for that we are eternally grateful. We can't thank all of you enough for your prayers as we felt and continue to feel every one of them. I have attached just a few of the amazing photos taken by the Now I Lay Me Down To Sleep Organization in the very precious moments we had with her. As most of you know we had made arrangements to have Faith's earthly body donated to research so that maybe one day more will be found out about Trisomy 13 and Holoprosencephaly.

And now these three remain: faith, hope and love. But the greatest of these
is love. 1 Corinthians 13:13

In Christ's Love always,
Mike, Jackie, Garrett and Baby Faith

I will write again soon with memorial service information, but in the meantime, we continue to ask for your prayers of comfort and if you wish to send remembrances or gifts we ask they be made in honor and memory of Faith to:

www.nowilaymedowntosleep.org  - Nonprofit organization specializing in creating special and lasting moments of the death of a child at birth.

www.sungrove.org  - This is home church to many of you and would love if you would like to place your special remembrance in Sunday's offering whether it is at Sun Grove or your own home church.

www.stanford.edu/group/hpe/centers/who  - Research dedicated specifically to holoprosencephaly (Nancy Clegg 214-559-8411)

www.trisomy.org  - SOFT is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder, and education to families and professionals interested in the care
of these children.

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August 7th, 2006
Hello and we pray this e-mail comes to you with many blessings. We wanted to keep everyone updated while we still can. We are now at 37 weeks and Faith is now considered full term. She is still very active and has a strong heartbeat. The doctors said we would not likely make it to term and here we are! I have been on maternity leave for two weeks now. We went to the hospital late Saturday night with contractions 5-7 minutes apart (mostly 6) and I am dilated to 2 cm. They had us there until almost five in the morning walking, but finally discharged us and said to come back when the contractions are 3-5 minutes apart or my water breaks. We are really tired only getting 6 minutes of sleep at a time…

My due date is not until August 27th, but it is only a matter of time now and we wanted to take time to thank everyone for your continued prayers and support. We could not have walked this road without God and the amazing love and support of our family and friends that he has placed in our lives near and far. We will try and keep you updated as we can or make sure someone does. We humbly ask to be kept in your prayers at this time of excitement, pain, fear, love, joy, rejoicing and so many other emotions happening all at once.
 
"Have faith in God," Jesus answered. "I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.
Mark 11:22-24 
 
In Christ’s everlasting love,
Mike, Jackie, Garrett and Baby Faith Anne
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June 30, 2006
My name is Jackie Van Steyn and my husband is Mike, we live in Elk Grove, CA. Our daughter’s name is Faith Anne and is due August 27th, 2006. We found out at 22 weeks in a level II ultrasound that our daughter has holoprosencephaly. There is the presence of a proboscis and they say she has cyclopia and were told termination was the only option. We along with many others prayed as to what to do next. At 24 weeks we had an appointment with the genetic counselor and had the amniocenteses done and that is when they confirmed Trisomy 13. My pastor advised us that God would put in our hearts the right thing to do and that no matter our decision God is a loving and forgiving God. So we prayed for many hours….days…we finally made the decision to carry our baby girl as long as God allows. I found an online support group for holoprosencephaly and was given an incredible amount of support, love and prayers. There is where I came across the scripture:

"For you created my inmost being; you knit me together in my mother's womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, 16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."  Psalm 139:13-16

That is when I knew for sure that she was exactly as God created and intended her to be and who was I to decide if her life is worth living as her mother…let alone doctors who were complete strangers to us. We are now about 32 weeks along and loving everyday we have with her. I have contacted the “Now I Lay Me Down To Sleep” organization and the photographer here in Sacramento has been a true gift to us. She has been out to our house and took maternity and family shots of us with our little girl in the womb alive, kicking and beautiful. Faith is our first child together as I have a 13 year old son from a previous marriage. Our photographer was able to capture the love and excitement we have for our baby girl in photos we will forever cherish, she will also be in the delivery room with us. We have been assigned an equally gifted hospice nurse who has been caring, encouraging and supportive in not only the prognosis of death but supportive in helping plan for Faith to live. At the holoprosencephaly support group I made contact with a woman in another state who was four weeks further along than I, also with a baby girl diagnosed with the cyclopia. Her baby girl has since delivered at 33 weeks, they were able to spend precious moments meeting their daughter face to face and handing her to Jesus together and to say goodbye. They don’t for a minute regret their decision to carry her as long as God allowed. Heaven has never been more real to them than it is now. With so much support from family, friends and the blessings of so many that God has brought in our path, I know more than ever that God is holding us up every step of the way. Thank you for this website and the lovely pictures and encouraging stories of HOPE and FAITH. I have another appointment July 7th and pray a prayer of blessing each new day we have with her. I will pray for all of the unborn babies being lifted up to God’s will and healing touch.

May God Bless,

Jackie Van Steyn
tojvs-faithannevs@yahoo.com
 


 

 

 submitted: 6-30-06

 

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Text and graphics © LivingWithTrisomy13.org 2005-2007 All information found on this site was submitted to us directly by the families and used on this site with their permission.
Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 

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