Not too long ago, I shared with you about the death of Evan Newport, a little boy with Noonan’s Syndrome. When Evan was born, doctors told his parents, Scott and Penni, not to expect their baby to live more than a year. But the amazing little boy survived longer than anyone expected.
Evan Lessons
In seven short years of grace, Evan taught his family and all who met him many important lessons. One of the lessons Evan’s father learned was captured in a beautiful video, Evan Newport – All Around Me, created by Everett Marshall. The video was in production before Evan died, and is now available for viewing.
God Salvages Good from Ruin
You can see Evan in action and hear his dad talk about the lessons he learned from his little boy. Prepare to have your definition of what has value and what doesn’t challenged and changed while you watch.
Will you ever look upon a special needs child or a discarded piece of wood in the same way? I sure won’t.
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Stephanie,
Thank you for the reminder that this disorder presents in different ways, which means children can have vastly different prognoses. Thank you, too, for the link to the very thorough and informative booklet. Parents of kids with Noonan Syndrome will want to check it out.
Jolene
This is indeed a beautiful and thought provoking video, thank you for sharing. However I just wanted to reassure others with loved ones with this disorder that most kids do not die by the age of 5 or soon thereafter as stated in the video, but rather that life expectancy is often in the normal range – providing that cardiac issues are not severe (see http://www.noonansyndrome.co.uk/docs/pdf_docs/What_is_NS_Booklet.pdf for example). All the best to everyone that finds their way to this website.
I’ll pass the comment on to Scott and his family. In case you didn’t know, Evan died the day after Thanksgiving this past fall.
Wow! Awesome video! You have a sweet little boy. Many blessings to you and your family. Know that God’s grace is sufficient for you.
Demetria
Thank you, Scott, for sharing Evan with us. What a precious little boy and how blessed he was to be born into your family. May God give you peace in knowing that your family’s faithfulness in caring for His gift provided a wonderful home for Evan. And may you rejoice in knowing that Evan is whole and happy in Heaven, with no medical restrictions. You will be amazed when you see him again at your reunion.
In the meantime, many will pray for you and your family. Please hug your other son for me. He made me think of our dear grandson Luke who loves his brother with Down syndrome even though he’s often had to take a backseat to Sam’s medical needs.