Our Butterfly Baby, Avery May Silva, turned one month on July 1st. She was born with Epidermolysis Bullosa (EB) a rare genetic skin and connective tissue disease that causes her skin to blister with the slightest friction. Avery is growing and changing but the blisters are constantly forming, both externally and internally. Avery has blisters in her mouth from nursing. This, along with a drop in her desire to eat, led to concerns that she has internal blisters that must be addressed. My niece took Ms. Avery to Yale emergency room to have a scope done. Poor, sweet Avery was held down while a tube was run through her nose and down her esophagus. Avery did not like this procedure at all. It was a traumatic experience for mom as well.
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| One Month - July 1, 2017 |
Recently Avery was coughing and choking during a feeding. She coughed really hard and spit up blood. A blister had burst. These internal blisters are a great concern. Avery has begun to lose weight. She is often not interested in eating.
My niece, Kristin, must cover Avery's hands almost constantly. There is so much concern over infection. Her tiny fingertips are blistered and raw where there should be pretty little delicate nails. Kristin took a photo of Avery holding mommy's finger on a rare occasion when her hands were uncovered.
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| I will hold your hand forever... |
There have been several fund raising benefits for Ms. Avery May. Bob Harwood, a friend of Avery's grandma, Linda Barnes, did a benefit concert for Avery. He raised over $700. A friend of the family, Michelle Sirici, started a Koozie fundraiser. She has generated over $1,700 for Avery's family.
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Bob Harwood with
Avery on his guitar strap |
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| Beautiful girl |
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| Brother Mason feeding Avery |
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| Kristin and Avery outside by the pool |
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Mason the protector!
He loves Avery so much! |
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Koozies for Avery ~ $5.00
All proceeds to go Avery and her family |
If you are interested and able to do so, you can make a donation to Avery's family. So far, generous supporters have given over $2,000.
My niece, Kristin, is getting lots of support and information from
debra of America, The Dystrophic Epidermolysis Bullosa Research Association of America. This is the only US non-profit that provides support to those in the EB community. They also fund research in search of a cure, and provide free programs and services to those families fighting this terrible disease. You can visit their website to learn more about the research trials.
Another organization helping our Avery May is the Butterfly Fund. Their motto is
"Helping children who, at the moment, are as fragile as butterflies"
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| Drawing from thebutterflyfund.org |
Please keep our beautiful Butterfly Baby, Avery May in your thoughts and prayers. She has a rough road ahead of her. She doesn't like the wound care and bandage changing. She wears special bandages called Tubifast that cover her wounds and attach without tape. Her blisters must be popped each day and her wounds cleaned and wrapped to keep bacteria away. Children with EB often need to take bleach and/or vinegar baths. Bleach kills Staph infection, vinegar kills Pseudomonas.
Mom reports that Avery is a happy baby. In spite of her challenges, she smirks in her sleep. So far, they haven't caught her happy dreams on film yet. Hopefully, those smiles will continue!
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| Avery May with her Aunt Jody |
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