Connor's Courage

Seven in Heaven

Happy Birthday my sweet Connor! It’s a beautiful sunny day that is going to be filled with celebrating you! Your favorite movies and music, a walk by the river, and a BBQ with all of your favorite foods (hotdogs, pickles, fruit, and root beer). I wrote this little poem for you for your birthday Superman. … Read more Seven in Heaven

Life is Good!

I bet you’re wondering if you read that title correctly knowing who’s writing it; a bereaved mother who lost her youngest son just a little less than a year ago. I have to admit, when I texted the simple words, “Life is Good”, to one of my best friends the other day, it stopped me … Read more Life is Good!

Thankful

The Perran Family is wishing you and your families a beautiful and blessed Thanksgiving! It’s so hard to believe that these photos of Jake and Connor were taken the day after Thanksgiving 2017. So many cherished memories to be thankful for! Love this new song called “Memories” by Maroon 5 and wanted to share it … Read more Thankful

Friendsgiving 2019

Last week, Trina and I had fun doing all of the shopping for Friendsgiving. We filled two shopping carts with groceries and were under budget thanks to Trina’s awesome planning :). So, we decided to get a movie theater gift card for each family as well in hopes that they can enjoy some special time … Read more Friendsgiving 2019

Angel Wings

This afternoon, our sweet Connor traded in his Superman cape for angel wings. We read him his favorite books, played his favorite music and movies, sang to him, talked to him, prayed with him and held him tight as he fought like a warrior to stay with us. When and only when he was ready … Read more Angel Wings

Connor’s Story

Connor was born on May 3, 2013, a happy healthy bundle of joy and the perfect addition to our family. He instantly blessed the lives of everyone around him. He adored his big brother Jake who was 8 yrs. old at the time and his dogs Luca and Chewy. Connor was thriving in every way … Read more Connor’s Story

About Batten Disease

Batten Disease, otherwise known as neuronal ceroid lipofuscinosis (NCL), is an umbrella term for 14 different types of lysosomal storage disorders. It’s a rare and fatal neurodegenerative disease where the process of removing waste from the cells is disrupted which results in the death of individual cells but on a massive scale. Once individual cells … Read more About Batten Disease

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