Jaxton’s story

Our Family found out on September 29th, 2010 that our 18 week old second son was going to be “extra special”. The diagnosis of Trisomy 13 is fatal and incompatible with life. This is our journey through that and how we are COUNTING OUR BLESSINGS!

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21 responses to this post.

  1. Posted by Kirstie on November 23, 2010 at 6:15 am

    Hello,

    I just saw your website.
    I had my little girl with Trisomy 13 on November 10th – less than 2 weeks ago but it seems like an eternity.
    I was unaware of her diagnosis until after she was born. She was whisked away from me straight away – we then spent a week with her at a specialist baby unit.
    I just want to offer my support to you right now – it is a tough journey, but I treasure every minute I spent with our little girl. She wasn’t strong enough to survive and is at peace now…
    Please contact me if you need to talk about anything. Wishing you and your family all the best.

    Kirstie

    Reply

    • Hi Kristie!
      I hope you are holding up.
      Just wanted to let you know I was thinking about you this very moment.
      I am so saddened by your story and hope you have been gaining the peace from the Lord and strength from family and friends.
      My prayers are with you!
      What is your daughters name?

      You night want to order a Gemma Bear for your precious baby girl.
      http://www.hopefortrisomy13and18.org/index.php?option=com_content&task=view&id=19&Itemid=31
      We got one for jaxton. They are so soft and cute.

      Reply

    • Posted by amanda on February 26, 2011 at 7:28 pm

      Kristie I lost my daughter 2 years ago to trisomy 18. my heart goes out to you & your family. I found a site where a family in Australia who writes our angels names in the sand at sunset and takes a picture. We got this done for our daughter & its a special thing we hold & hang in our home. maybe it can also be something you and your family can cherish if you choose to get it done. the website is namesinthesand.blogspot.com i am wishing you & your family the best in this hard road. my heart goes out to you.

      lisa, i pray you don’t need to use the website i provided. my prayers are going out hard for jaxton, you & the rest of your family in this time. i look forward to the posts to see how he is doing. you are a very strong woman!! my thoughts & prayers are going out often!

      Reply

  2. Hi Lisa! Although my son has a different disorder, we too have travelled a similar path. God is good, and He is sufficient. I am praying for your family and little Jaxton.

    Heart hugs,
    Hollee Stanton

    Reply

  3. Your story hits home with me, because we have friends whose 7 yr old daughter suffers from brain tumors. They are praying for God’s divine healing, and are giving praise all along their journey.

    I am praying for you and for Jaxton, who is indeed a ‘special’ little boy. Be blessed! God knows what you need, and He always delivers.

    Reply

  4. Posted by Charla on February 24, 2011 at 2:43 pm

    This family has been heavy on my heart. I’ll continue to pray for them.

    Reply

  5. Posted by Carol on February 25, 2011 at 1:45 am

    Our prayers are with Jaxton and you. What a beautiful story of Christ’s love through your family. God Bless you.

    Reply

  6. Posted by Karen Colasuonno on February 25, 2011 at 12:38 pm

    lifting your family up in prayer…saw your blog on a friends FB page and will absolutely be keeping you in prayer.

    Reply

  7. Hello from Richmond, IN. My daughter, Rachel, has semi-lobar Holoprosencephaly (HPE) also. Rachel is 8 years old, almost 9. Rachel was a Riley NICU baby. Not sure where you are at, but I would love to know where you are at and to encourage you to go to http://www.familiesforhope.org and fill out the contact us page. Families for HoPE is an Indianapolis based support organizations for families touched by HPE and related brain malformations. My prayers are with your family.

    Reply

  8. May God comfort you through this confusing and difficult time in your lives (2 Corinthians 1: 3-7). A choice spirit from heaven was reserved for Jaxton’s body. Your family will be blessed by this experience in ways not yet seen. Although I’m a complete stranger to you, I will be praying for your family. Whatever the outcome, God loves you.

    Reply

    • Posted by Judy Matson Ford on February 28, 2011 at 1:55 pm

      Lisa, Josh and Jake,

      We just wanted you to know that the women at the PFB Women’s Retreat have all been praying for you and your little Jaxton. We miss you and are with you in this trying time.

      Reply

  9. Posted by Jenny Higginbotham on February 28, 2011 at 1:14 pm

    Please know that my church home of Sheridan Six Points Weseleyn Church is praying for you and your baby. We also have a family in our church named Jason and Kelli Hine who approx 15 mos ago had a baby with similar health issues as Jaxton. OUR Lord has blessed them and as of today their little Ethan is still with us as God is using his precious life to show all of us the miracles he is able to do. I remember so many times hearing Jason and Kelli say that the feel so blessed to have Ethan and what ever time they have. They are an awesome family who loves the Lord and I have discussed your family with them. They are wanting you to know that they are available to help in any way, to answer questions, be there for support what ever you need. I have given their number to Raechelle Stanback, but if you would like it again please ask and I will get it for you. Just know that our church will continue to left you up in prayer and praises to our Lord.

    Jenny Higginbotham

    Reply

  10. Posted by Bert Jacklitch on March 5, 2011 at 6:35 pm

    Words are inadequate. Praying that God will hold you all close. God is honored that you are honest and authentic. Picturing his arms securely around you and Josh as you hold Jaxton and Jake.

    Reply

  11. I just wanted to let you know, that you are an inspiration to all women. I have only been following your blog for a few days, and you have touched my heart and those around me. I pray for you and your family in your hard times, and I pray for little Jaxton who has a piece of my heart.

    Best wishes,

    Jillian

    Reply

  12. Hi Lisa, i have been following your story since we addes eachother on facebook, and im in awh over Jaxton and all your love for him! He truely is amazing! You all are in my prayers everyday!

    Reply

  13. Posted by Brent on March 9, 2011 at 8:55 am

    I’m a 6’4″ construction worker…there is nothing remarkable about the man. However there is something remarkable and wonderful and yes at times even difficult, about the love of Jesus Christ in those of us who call ourselves by his name.

    I could give you a scripture, but right now even that would probably seem woefully inadequate. I could offer you words of encouragement, but sadly they would be little more than exhaled air to you right now…

    So I’ll simply say this…we are all part of the beautiful body of Christ..and if we understand that this eternal family surpasses this worldly one, then I hurt because you hurt…just like I have hoped as you have hoped..and loved as you have loved through this time…will continue to talk to God on Jaxton’s (and your) behalf…

    I love you guys!
    Your brother in Christ
    Brent

    Reply

  14. Posted by Tonya on March 9, 2011 at 4:40 pm

    Praying for your beautiful and sweet family. May God bless you and be with you all during this time. I pray for complete healing of your son. I am 18 weeks pregnant, and my husband and I fell in love with the name Jaxton. While googlng the name, I came across your story. I will continue to saty up-to-date with what is going on with your precious Jaxton. Again, many prayers your way.

    Tonya Coke

    Reply

  15. Dear Jesus, we don’t know why you do the things you do sometimes. It is a mystery. Sometimes there are lives that are just too precious to you, too special, too sweet. That the best home, the safest and best home for them is in heaven with you. I pray Lord God that you would give baby Jaxton a sweet kiss, that you would cuddle with him and that you would rock him in your lap tonight.

    I pray that you will be with his mommy and daddy who are hurting and that you will help his big brother Jacob to know that you are watching out for him, even though he can’t. God we thank you for the things you do, even when we do not understand them. We praise you through this storm. And ask that you will hold onto Lisa and Josh’s hands as they walk through this. They are not alone, they have an army of strangers in prayer behind them. Help them to know that God. Thank you for the blessing that this little life has been, and for the lives he, in his very short life, have touched. In your glorious name I pray… Amen.

    Reply

  16. Posted by Jen on May 9, 2011 at 11:40 pm

    Lisa,
    You and Josh are truly an inspiration to my husband and me. Sharing similar situations in that we both have lost babies in the month of March, I admire your faith and strength. I absolutely loved reading your blog and will be sure to keep reading. I might even start a blog of our little angel’s story.

    I attended my Bible Study on Isaiah tonight and 61:1 really stands out to me: The Spirit of the Sovereign Lord is on me, because the Lord has anointed me to preach good news to the poor. I know that the Lord is using the two of you to show others the amazing faith that you have. I am so grateful that Andy and I attended Bridgeway the Sunday after delivering Leah. I’m so thankful that your husband offered to pray for us and I am even more in awe of God’s timing with this. After your husband prayed, he was walking away and then he turned around to write down your email. You have changed my life and I am forever grateful that we have met. Love you!
    Jen

    Reply

  17. Thank you for keeping your blog open. I was told by Amy Bain to view. I’m pregnant and my baby was diagnosed with T18. It is certain through DNA. Although in my mind I know what journey lies ahead your blog was very helpful to see real life photos and video…especially with joy and praises to God. Jennifer Pyatt

    Reply

  18. Posted by Linda on July 13, 2013 at 5:51 pm

    Hi guys, thanks for sharing your life here, specially the life of Jaxton.
    We are a family from Germany. Our little girl Amy is one of the survival trisomy 18 baby, she was born on 26th april this year. She’s doing fine and passes the statistical 8 weeks age. Praise the Lord!
    On September this year she shall have her heart operation (vsd). We’re praying every night for her health, since my 12 weeks pregnancy, since we knew that she would probably having trisomy 18/21.
    Amy is to us a sweet heavenly blessing, it was not easy passing the first weeks. But we believe, that Amy is born for one special reason, to make a difference in this world. We believe that Lord Jesus prepares something good for all of us, and for Amy.
    Thank you so much that you are keeping this website. Jaxton’s life strengthen ours. God bless you guys… And your baby girl 🙂

    Reply

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