On Friday, October 4th, 2019, our beautiful Butterfly Baby, Avery May Silva, gained her angel wings. Like a chrysalis releasing it's graceful butterfly from the confines of the cocoon, Avery slipped away from her earthly body into heaven; finally free from her painful battle against Epidermolysis Bullosa (EB).
Avery was born with skin as delicate as a butterfly's wings. She needed attention and intensive care 24/7. Babies born with EB have so many complications due to the fragility of their skin that it is a challenge to keep them safe from infection. Our sweet Avery had a feeding tube so she didn't experience the pleasures of tasting new foods. Her airway was compromised so she was on high doses of steroids to help her breath. Avery spent much of her life in and out of the hospital. She endured hours of painful dressing changes that were needed in order to protect her many wounds. This was the only time Avery cried. She was such a happy baby.
Avery's mama, Kristin Dailey Silva, tirelessly protected and advocated for her. I witnessed first hand, her poise and the love and tenderness she showed sweet Avery. From the moment she arrived, Kristin dedicated herself to giving Avery May the best life she could experience. They had a very special bond. Avery's eyes were huge, expressive, intense and incredibly blue. Those eyes said so very much. She only had to look at her mama and Kristin knew what she needed or wanted.
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| This is how Avery feels about her head wound |
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| Avery and Kristin |
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| Snow Day |
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| Avery with big Sister Alissa |
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| Avery at Ocean Beach |
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| Happy girl...joyful moment |
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| Avery at Mystic Aquarium |
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| Avery with big brother Mason |
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| Avery with Mommy, Daddy and brother Mason |
Avery was a beautiful gift to our family. Her life was short and filled with challenges but we were blessed with each moment we had with her. Kristin shared Avery's life with the world on a Facebook page called Avery's Butterfly Journey. People from around the world followed Avery's progress and prayed for healing and a cure. The world now shares in our incredible loss.
A celebration of Avery's life will be held on Tuesday, October 15th at the Groton Elks Club at 1:00. It is open to the public. For more information please visit Byles Website:
Donations in Avery's memory may be made to:
www.EBResearch.org/donate
I try to find comfort in knowing that she is out of pain and free from the challenges she faced her entire life. I picture that big beautiful smile soaking up the glory of heaven.
We will love you forever, Sweet Avery May!
Note: All photos are compliments of Avery's Butterfly Journey Facebook Page. Thank you Kristin Dailey Silva
1 comment:
My heart goes out to the family. What a beautiful little girl. Thank you for sharing.
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