Thursday, October 18, 2012

"Our Sonny Life"

Because NPA is so incredibly rare, there is very little information to be found - even in the medical literature, to which I have direct access.  The only place we really were able to turn were the blogs of those children who have come before Quinn - Kaitlyn. Wylder. Faith & Riley. Jacob. Mia.  

And Trek.  

Each family had their own story, their own way of handling any parent's worst nightmare.  And one of the most awe inspiring is the story that the Ingrams have to tell.  

Trek Atlas Ingram, like Quinn, was born into a family of two big brothers (Peyton and Conner) and two parents (Chelsea and Jarrett).  And also like Quinn, Trek had Niemann-Pick Disease, Type A.  Trek's family took him on a most amazing journey - literally!  He received four stamps on his passport before ultimately - and peacefully - succumbing to NPA in Thailand, where his family currently resides.  

I am so sad that I never got to meet Trek.  But I talk to Quinn about him.  A lot.  I tell her that Trek and all the other children will help her when she's ready.  That she has friends who are playing together now and with whom she will play until mommy and daddy can be with her again once her time here has ended.

Chelsea and her family have been an awesome source of comfort, inspiration and support since we first 'met' just about a month ago.  And true to her nature, Chelsea wanted to introduce our family and our story to her readers and supporters that have helped them during this most unfortunate journey.  Thanks to modern technology, Chelsea conducted an interview over email and published it on her blog this morning.  Now, mind you, Chelsea and Jarrett are also in the throes of final edits on the forthcoming book Following After Trek.  And raising two boys.  And grieving for their son, who lost his battle less than four months ago.  And somehow, someway, she has made the time and effort to reach out to us, to share our story, to ask me how I am doing.  She is truly amazing and we are already so much better for knowing Chelsea and her brave, amazing, loving family.

Please visit Our Sonny Life and learn about Trek and his wonderful family.  Jarrett's book comes out next month - I'll post here and let you all know when it's available for purchase!

6 comments:

  1. i love the picture at the top of your blog! your family is so beautiful. Thank you for sharing ours and Trek's story. It means more than you know. Finding out about Quinn a few weeks ago was very intense and brought a rush of emotions. I am so thankful to be able to watch her story unfold. she is so precious. so much love to your family-xoxo chelsea

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  2. Chelsea and the Ingrams are very special people, indeed! I feel privileged to have a glimpse into their lives through their blog. I'm so excited to get to know the Linzers as well!! I can tell that you all are bonded by a deep loveHope your Friday is a happy one!!

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  3. I'm privileged to have Chelsea as my niece and the dictionary doesn't have enough good words in it to describe her, Jarrett and the boys! Your blog brought tears to my eyes. I truly hurt that you have to go through this horrible nightmare, but God brought your families together for a reason and I love how you tell Quinn that Trek will help her when she's ready. I will continue to pray for your family and I look forward to watching Quinn's check list get checked off!

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  4. I am so happy that you and my sister have met online and you are both able to connect on such a level. I hate the circumstances that you have met, but am so glad you have. I think the world of my sister and of course her family:) I can tell already what beautiful parents you two are and your boys and sweet Quinn are so beautiful as well! My heart breaks for you all... I am so happy to follow your journey through your blog and I know you will continue to fill Quinn's days with pue happiness, fun and beauty. I am sending lots of love your way!
    Amanda-Trek's Auntie

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  5. It is true, Eileen - all of us, whether personally touched by NPD or not, who read these blogs truly hurt that you and your family have to experience this nightmare. But like those above, I am happy for you that you have found the loving support of the other NPD families and I hope, too, that the love and support that come to all of you from your readers will somehow insulate you just a bit from the continual shockwaves and bring you peace and comfort from knowing the positive impace your sweet Quinn will have on so many lives. Although I hate the circumstances, my days just would not be the same without morning coffee with all of you. Continued prayers, love and good thoughts. Eagerly awaiting which list item move to the checked column! xoxo

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  6. I'm sorry that you guys had to meet this way, but I'm thankful that you share your lives and stories with others. Trek has made such an impact on my life and the lives of others around the world. I can't imagine all the ways Quinn will touch our hearts...seems like she already has. -Angela

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