Goodbye, Evan Newport
A few months ago, I posted an update about Evan Newport, a little boy featured in A Different Dream for My Child. The blog post told about Evan taking part in the festivities surrounding the Big House/Big Heart Run in Ann Arbor, Michigan this past October.
Now it’s time for another update on Evan and his family. Early Friday morning, the day after Thanksgiving, a brief email arrived from Evan’s dad, Scott. “Evan died,” it said. “Love to all who have followed our journey.”
Noonan’s Syndrome
When Evan was born and diagnosed with Noonan’s Syndrome, a heart condition which thickens the heart muscles, the doctors didn’t expect him to live more than a year. But he battled Noonan’s Syndrom and a terminal condition called “hypertrophic cardiomyopathy,” which kept him on a ventilator most of the time.
Evan Newport Touched Hearts
Evan’s fight is now over, but he continues to touch many lives. Scott emailed this morning to say that he and Penni, his wife, have been reading the hundreds of emails they’ve received. “I guess I never really knew just how far-reaching Evan’s little precious life was,” Scott wrote.
Their little boy’s life continues to reach others as this article at AnnArbor.com shows. And these recent pictures, arranged and provided free of charge by the pallative/hospice organization working with the Newport family, will touch your heart, too. Information about Evan’s homecoming is available at www.lynchfuneraldirectors.com.
Goodbye, Evan Newport
The Newports lived with the specter of Evan’s imminent death every day of his short life. Scott once told me their living room was basically a pediatric intensive care unit, complete with nursing care and a ventilator. But living with the reality of death doesn’t make saying goodbye to Scott and Penni’s little boy and Noah’s little brother less difficult. Adjusting to life without Evan won’t be easy, either. For seven years, this family’s life has been defined and bound by Evan’s needs. Now they have to learn to live without the roles of parents and sibling to a special needs child. Doing so will take time.
So when you think of this family, please pray for them. Pray for comfort in the midst of their hurt and loss. Pray for their faith to remain strong. Pray for their loved ones to remain supportive for months to come. Pray for for sweet memories of Evan and his life with them.
Goodbye, Evan Newport,
Jolene Philo
Evan was well loved — your photos illustrate that! Now, he’s with his Creator, and no longer struggling. It’s hard to lose a child. Our son, Jeff, lived with us for 27 years with Down syndrome. (I wrote his story, including the last days of his life, and after, in a book titled, “Journey With Jeff; Inspiration for Caregivers of People with Special Needs.” ~Available at Amazon.com) My thoughts and prayers are with you and your family at this time.
Wow is all I can say. What a family of warriors, and fighters of life and living. Prayers for the family. Evan is watching down, running-playing and free of that disease!
Yes, they are an amazing family. And from what I read at your blog, your family is, too! Colton and Emma are beautiful children.
I will be praying for their family
Joy,
They appreciate your prayers. Scott recently told me his grief has been deeper than he ever imagined it would be.