We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Thursday, June 21, 2012

Embrace Life



Our family is once again heartbroken to hear that an amazingly strong little boy named Trek, passed away from Niemann-Pick Disease type A. Our hearts go out the Ingram Family as they mourn the loss of their sweet little boy and brother who was only 14 months old. Although his time here was far too short, he lived an incredibly adventurous life filled with an abundance of love. I've been following The Ingram family's blog Our Sonny Life (written by Trek's wonderful Mama) for several months now and am in constant awe of the this family's approach to Embrace Life as they go on adventures in search of more passport stamps for Trek. This family is so incredibly inspiring!!!

Trek was one of the four children in the United States currently persevering against Niemann-Pick type A. Even though Jacob is technically considered type A/B because of his gene mutations, I include him in this count because of the way his disease is progressing with early onset and the symptoms that he has. In connecting with these other families whose children have Niemann-Pick Disease, I feel a deep connection with all that they are enduring. There are no words of comfort that I can offer, but I have deep empathy for this tremendous loss in their lives. It is difficult to describe, but my soul is crushed each time one of these little angels leaves us and my heart literally breaks to pieces when I think about Jacob.

Please send extra prayers and loving thoughts to the Ingram Family. If you visit their blog, feel free to leave a comment because every kind word and prayer really does matter!

Trek has left his footprints on our hearts!
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6 comments:

  1. AnonymousJune 21, 2012 at 10:51 PM

    Such a sweet face! Prayers to his family <3

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  2. UnknownJune 21, 2012 at 11:25 PM

    so heartbreaking. all my love to that little angel and Jake!<3

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  3. Cathy JohnsonJune 22, 2012 at 9:18 AM

    Sarah - what a lovely tribute to Trek. I have been following the blogs of the NPA families and cannot thank each of you enough for sharing your joys and sorrow with us. It is my hope and I'm sure that of countless others that our love and support truly do make a difference in your lives. We have your backs in whatever small way we can. Each of these littles has his or her own special message to impart and I am thankful for the opportunity to hear them. They will be in our hearts forever!

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  4. AnonymousJune 23, 2012 at 9:46 AM

    Sweet Trek warmed our hearts with his smile and will be remembered forever. We pray for strength for his family in this difficult time.

    Nanci Glassman

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  5. AnonymousJune 28, 2012 at 10:38 AM

    What a handsome face on that little boy. The Ingram family has it's own special angel. While the heavens greet this lovely child, the grief here on earth to let him go must be overwhelming. Our thoughts and prayers to his family and friends at this sad time. There is nothing that prepares us for the loss of a child. Hugs to you, Josh and Jake. xoxo Barby

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  6. AnonymousJune 29, 2012 at 11:27 AM

    A special prayer for the Ingram family. Another little angel is among us. Much love to Jacob as well.
    Teresa

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