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  • 00:31

    Special Guest Jessica Kenley, talks about EB and her books

    in Caregiving

    Jessica Kenley was born in 1981 in Buffalo, NY. She lost two of her children, Ethan Tyler and Kaylee Marie, to the Junctional-Herlitz subtype of Epidermolysis Bullosa during their infancy. She is a licensed veterinary technician and has since had 3 healthy children. She wrote the book "Kidowed" to describe the struggles, sorrows, and triumphs of her first two children's painful and short lives. In her second book, "Walking the Mile", she attempts to resume her life with a new husband, a new town, and a new baby. She describes her journey through the struggles with undiagnosed and stigmatized mental and physical illness, resulting in addiction, alcoholism, and the abandonment of her family and society as a whole. And finally--the light at the end of the tunnel.

  • 00:27

    Special Guest Derra Nicole Sabo, talks about having EB and her books

    in Caregiving

    Special guest Derra Nicole Sabo is 30 years old and lives in Apple Valley, California. She was diagnosed at birth with Recessive Dystrophic Epidermolysis Bullosa. She loves to write and has published a few books about her life. Join us as she talks about her life, living with EB!

    In her own words: "I may have bandages on my legs and occasionally on my arms, my hands may look like fists and it may take an extra dose of creativity when accomplishing certain tasks, but I wouldn’t trade my life for anything. I love my family and friends, I love cooking in the kitchen, dancing, music, movies. I am a writer and an artist. I am strong, secure and not afraid to stand up for what i believe in"

  • 00:23

    Special Guest Heather Fullmer, talks about being an EB mom & the EBRP

    in Caregiving

    Special Guest Heather Fullmer talks to us today about being an EB mom and shares about what it means to her to be one of the founders of the EB Research Partnership. http://ebresearch.org/

  • 00:15

    What is Butterfly Talk?

    in Caregiving

    A quick podcast to test the waters, explaining why I decided to start this and what Epidermolysis Bullosa is in general and what my son goes through on a daily basis. My son Nicky has the Recessive Dystrophic form of EB. This blog talk radio podcast will feature guests and will be a permanent part of the ebinfoworld.com website. I start this podcast in conjuction with the upcoming release of my book "Butterfly Child", my journey from the stillbirth of my first son Alex, followed by a miscarriage and the birth of my son Nicky and what life has been like for him and us for the past 20 years.

  • 00:30

    Special Guest Lorraine Montello, talks about being an EB mom & Montello Foods

    in Caregiving

    Special Guest Lorraine Montello talks to us today about being an EB mom and shares details about her business venture, Montello Fine Foods, which she started with her son Garrett.


  • 00:30

    What's the Matter with Megan?

    in Health

    Megan Barron has lived her whole life with a condition called recessive dystrophic epidermolysis bullosa, a rare connective tissue disorder.  Her skin layers don't have the proper protein to hold them together, rendering my skin very fragile, and causing reoccurring blisters and wounds internally and externally. She has to wear bandages to protect her skin and any open areas from infection.

  • 01:03

    A Celebration of Butterfly Children through Music & Love

    in Entertainment

    XOCH. Her music, her look, her presence, they stimulate your senses and demand your attention. With a tour de force of vocals and a commanding stage presence, singer/songwriter front-girl XOCH (pronounced “Zoach”) knows how to grab her audience with huge hooks, a driving  dynamic rock/pop sound and powerful lyrics that resonate inside your head and refuse to let go. Her name means “the goddess of flower and song”, and she is just that.    XOCH has received critical acclaim from all over the world for her music. She has had nearly 60 major licenses of her original music to ABC, MTV, VH1, Lifetime, Toyota, Jeep/Eagle, Warren Miller, and many more. She has released 4 CD’s to date, including “Hollywood”, “popcore du jour”,“Cabaret” and “The ONE”.   .A new force in female fronted rock/pop is ready to take the world by storm, and her name is XOCH.   Silvia Corradin, is a 48 year old mother of 3 boys, one in heaven and two on earth.  Her 16 year old suffers from a skin disorder called Epidermolysis Bullosa. He has one of the more devastating forms called Recessive Dystrophic, so rare only 3 babies in a million are born with it. His skin is as fragile as a butterfly’s wing, which can blister at the slightest touch; even from cuddles. Normal day-to-day life causes constant pain and scarring, which leads to disfigurement and disability. Visit ebinfoworld.com Silvia is a graphic artist, photographer, author, webmaster and blogger. You may find samples of her work at ‘Sleeping Angel’, named in honor of her own stillborn angel, Alex. Her book 'Losing Alex' can be found at Amazon and Lulu.com 

  • 01:01

    A Hero's Journey with Special Guest Tim Ringgold

    in Spirituality

    The Hero is an amazing archetype in books, movies and stories passed down over generations.
    Each of us has the Hero archetype within us, maybe it is latent maybe it is emerging and perhaps it has blossomed and the beauty of that blossoming continues.
    Join me today with Guest Tim Ringgold a real life Hero in my book. 
    We are ALL faced with challenges, I do not believe there are any exceptions in our human experience. 
    What we do, how we react and how we perceive these challenges is what allows that Hero to emerge, shine, triumph and inspire.
    Come get inspired today-this is a show you will not want to miss!
    You will also get an opportunity to be a hero today, come find out how! 

  • 01:00

    Live Natural Live Well

    in Health

    Andrea Pett-Joseph, a manager at Brillstein-Grey Entertainment, started Epidermolysis Bullosa Medical Research Foundation after her son Brandon was born with the disease. EBMRF is a volunteer non profit dedicated to helping medical scientists learn more about EB, its causes, the development of successful treatments, and its cure.
    Learn more about how you can get involved in this incredible charity. Call in with questions!

  • 00:40

    Episode 21: The Fun and FUNDS of Overseas Adoption

    in Lifestyle

    Karrie and her family are on a mission.
    They have a goal that will ONLY be achieved as they fully rely on God. When you hear Karrie share all that is involved, everything they must overcome, the list of steps and tasks they must complete…
    Bringing Home Carson and John - Facebook Fanpage
    Two brothers fighting daily to STAY alive.
    A family fighting daily to SAVE their lives.
    How can an overseas adoption be FUN when you know there's a major need for FUNDS? Find out:
    Listen to The Cannell Family's story (BLOG: Bringing Carson....and John Home)and you will thank God for the children He has given you, the good health you and your kids have, the life you live, and even the water you bathe in...things we take for granted daily.
    The boys' rare skin disorder is called Epidermolysis Bullosa; blistering of the skin caused by the slightest friction turns into huge sores. They need medical attention fast, and Carson needs surgery to open his esophagus and will several times a year. Swallowing even water hurts.
    I am reminded of Phil. 4:19 - "My God will meet all my needs according to His glorious riches in Christ Jesus."
    Right now, this family has a HUGE need and they are trusting God to provide for it. That is one of the BIG REASONS I asked Karrie to be my guest on ExcellenceWorx Radio - to share her story AND to provide an outlet for her to further get the word out.
    Your listening today is no accident, it is an answer to prayer! Listen to find out why as we continue our focus in May and June on: Fertility and Adoption Families

  • Special Guest Jennifer (Lyric) Bolles talks about Life with EB

    in Caregiving

    About Jennifer in her own words:

    My name is Jennifer (Lyric) Bolles. I was born in FL and have lived in many different states throughout my life. Currently, and indefinitely, I am in Cincinnati, OH. I moved here almost 6 years ago for the EB drs at Cincinnati Children's Hospital and Medical Center's (CCHMC) EB center. My health was drastically suffering as a result of the arrogant, ignorant FL drs who refused to learn about EB

    I am 42 yrs old and have Recessive Dystrophic Epidermolysis Bullosa. My subtype of RDEB is Inversa, an extremely rare subtype of RDEB. I am externally affected by this subtype of RDEB but my chronic areas are mostly where skin rubs/meets skin. I am more affected internally (oral, esophageal, GI etc...).

    As a child/young adult, I was active in choral groups, ballet, gymnastics and track but not without injuries. I kept trying and pushing myself until my 2nd year of track in high school. Ultimately, I did quit track as a result of falls that caused severe damage all over my body which took weeks to heal each time. It's one of the rare times in my life that I was truly emotionally devastated by having EB.

    I began working after high school in retail, food service, clerical positions and found my way to my true love, working with children, specifically special need children, typically ADD/ADHD, mental, emotional, behavioral issues, victims of abuse and neurological issues. I've been working in Child Development for almost 20 years. I am only able to work part time as a result of EB and Fibromyalgia so I typically work with private families who need PT or occasional care.