Children (and adults!) with EB Simplex

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  Hi there! My name is Alexus Puder and this is me and my daddy, Kyle Puder. We both were born with EB simplex along with my uncle Leigh... I'm 4.5 months old and I've been in the hospital 2 times since I was born.. Every day my mommy and daddy have to look after my wounds and blisters... It's very very painful but I know they are only trying to help.. The doctor gave my mommy and daddy special stuff to put on my owies called Mepitel and Mepitac, along with a special cream to help my owies not get infected... Every day we pray for a cure to be found... My daddy drives the doctors here crazy, because he's lived with it his whole life and tells the docs he did everything the doc told him not too (ie played hockey as a child and does construction for work)... My mommy and daddy don't wrap my wounds because if they do, more blisters and sores form ... My parents say I'm a very brave and very strong little boy to have to deal with this. My big sister is a big help too.. I know when I'm older I can count on her to help me... My daddy says he wants me and my sister to take self defense classes because he knows I'll get bullied in school because of this disease... I hope people are more understanding then that when I get old enough to go to school..

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  My name is Karen Reinders, I was born in July 1965 in Chillicothe Ohio. My daughter Elyse Reinders was born in May 1986 in Burnsville Minnesota. We are both residents of Lakeville, MN. We are 2 of many in my extended family with EB Simplex. I gave birth to Elyse and her Brother Nick. Nick is EB free. May God Bless all who suffer...especially those with Dystrophic EB!!

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  Hi my name is Kayano Laws, I was born in 1999 with EB simplex. I lived in Japan for 8 years but currently live in portland OR. My parents names are David and Kozue and I do not have any siblings. This was my first year high school and the experience so far has been amazing. I dance with the Jefferson Dance student company and last year I was scouted by a modeling agency. EB hasn’t stopped me yet 🙂

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  Madison and Michael Grider were born on January 25th, 1996 (Madison) and December 1st, 1998 (Michael). They have the Simplex, Dowling Meara form of EB. Madison loves to sing and ride her bike, and Mike loves his cars and his fire truck. They also love their Mini Dachshunds Tosha and Teddy and live in sunny Florida with their sister Jessica and their parents Jeff and Jenn.

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  Hi, my name is Devin Forde I was born May 15, 1995. I'm 15 yrs old & I live in Queens, New York with my family. I have 2 brothers and 3 sisters all EB free except for me. I'm the youngest out of the 6, all my brothers and sisters are over 21yrs old, my mom's name is Laureen Forde and my dads name is Calvin Forde, i have EB simplex and its a hard struggle but i get through life, im energetic and love doing sports especially fencing and track and nothing can stop me, i follow my dreams and nothing will stop my thrive for that.

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  Brittany Penta was born May 10, 1973. She has the Simplex form of EB. She lives in New York State.

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  Our hero, Christina Minkey was born September 29, 1999 and has EB Simplex subtype yet unknown. She lives in Northern California with parents Jim and Lesley and little sister Elena (who is 9 months younger). She adores her sister as well as her two kitty cats Obadiah and Leah. She has taken on the challenges of her many blisters with a strong spirit and delightful sense of humor.

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  Alicia Janine Yates was born is July 16 1999. She has EB Simplex, subtype unknown (most resembles dowling meara). Her family lives in Ohio and her parents are Nick and Connie Danell Yates. Her sibling is one older sister, Kayla. Her cat's name is Arlo. She loves to dress up and dance like a ballerina and her favorite toys are the little Kelly dolls.

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  Anna Dittman was born in April of 2001 to Wendy and Todd Dittman. Anna enjoys art and dance and she loves entertaining her 2 sisters; Madelynn and Thalia. Anna had the honor of serving as a "Champion" for Children's Miracle Network in 2006. She helped increase awareness of Epidermolysis Bullosa and the importance of Children's Hospitals across the country! Anna resides with her family in the Chicago area.

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  Benjamin Pyles was born November 19th 1988. He has the Simplex form of EB. He's been playing the violin and saxs in band. Benjamin was also born with atopic dermatitis and has many allergies do to this disease, he is a wonderful, sweet, courages young man. He has endured pain and has been popping his own blisters since the tender age of 2 he has had as many as 33 on each foot frequently 1or 2 on top of the other, his hands, feet and some parts of his arms and legs are scarred and aged. He lives in Gresham, Oregon with his mom and dad.

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  William Robert Grizzle was born March 16th, 2002, and was diagnosed with Simplex Dowling Meara. He lives in San Diego, CA with his Mom and Dad, Curt and Jessica Grizzle.

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  Hello friends – my name is Keenyn Rhys and I turn 4 years old September 29th 2010. I live with EB Simplex (a/k/a those blisters), my older sister, Wynter (EBS and very talkative by the way), my mom (EBS and the most awesome mom in the universe), my dad (backpacker extraordinaire)…our large Bouvier dog and two very small dogs who think they are big. We live in the Seattle area and it IS currently raining.

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  Hello to all – my name is Wynter Rhys but I go by Wynter.B. I am nearly 12 (December 20th 2010). I was born with EB Simplex and a huge case of creative energy. I live in the Seattle area with my little brother Keenyn, my mom, dad, our three dogs and new goldfish - where I enjoy writing, reading and learning Japanese.

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  Lamees Nassir Al-Suwaidi was born on July 25, 1996. She was born with EB Simplex. She lives in Saham, Sultanate of Oman with mom and dad, and brother Ahmed (born in 1990) and sister Shama (born in 1994) which are EB free.

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  Hannah Enlow was born April 11, 2000. She has the Dowling Meara form of Simplex EB. She lives in Greenville S.C with her momma, her gam-ma, and her two little sisters who are EB free. She goes to school and loves to play. Her favorite color is yellow and she likes to watch "I love Lucy". Hannah is a very strong willed little girl who doesn't let anything get her down. She does the best at everything she does.

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  Donovan Lang was born in May 2004. He has the Simplex-DM form of EB. Donovan has a sister Hanna that is 2 years older than him that is EB Free. Donovan's mommy Liz has EB as well as his cousin and his grandfather and Uncle (no longer living).

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  Hello, my name is Dillion Prater, my birthday is June 5, 1997. I was born with EB Simplex. I like to play football and go fishing. I am also looking forward to meeting someone with EB someday. I live in Kingsport, Tennessee with my mom Patricia, and dad.

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  Matthew Nini was born August 27, 1999. He has the Simplex form of EB and lives in Butler, Pennsylvania, with his loving big sister Kayla, and his parents: Angela (who also has EBS) and David.

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  Kallista Ann Thompson was born August 27th, 1999. She has the Simplex form of EB. The important thing with any child is that they are thriving, and are loved. In this photo she is with her big brother Jerome, who is EB free. They live in California.

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  Amanda Williamson was born April 9, 1991. She has the Dowling Meara-Simplex form of EB. Amanda also struggles with Attention Deficit Hyperactivity Disorder and some learning disabilities. She lives with her family in the suburbs north of Atlanta, Georgia. Amanda has an older half-brother, Bradley, who she adores. She also has a younger sister, Erin. Erin does not have EB but is a Type I Diabetic and has complications with a very rare blood-clotting disorder.

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  Gabriella Griffith (Gigi), was born April 4th 1995. She has the Dowling Meara-Simplex form of EB and lives in Yardville, New Jersey with her mom (Sylvia) and dad.

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  Samantha Renee Denslaw was born on August 29, 2002. She has EB Simplex Dowling Meara. She lives in Orlando Florida with her parents, Sara and Joe. She has a younger brother, Garrett, who is an EB Angel and a younger sister, Summer, who is EB free. Samantha loves to play with her dolls, sing songs, swim in the pool, hold her new baby sister and play with her dog, Chloe.

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  Kendall Lee Teague was born May 16th 1996. He has the Simplex form of EB. Kendall enjoys watching Barney, but most of all Bill Gaither videos. He also enjoys coloring and riding his tractor. He lives in Ranburne, Alabama with his mom and dad Duran and his big sister, Katelyn.

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  Luke Sinanian was born March 21st 1996. He has the Dowling Meara-Simplex form of EB, and lives in Australia with his older brother and his mom and dad.

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  Anton Cujec was born in the spring of 1997. He has the Simplex form of EB and lives in Northern California with mom (Carol) and dad.

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  Tori Cameron was born November 12th 1998. She has the Dowling Meara-Simplex form of EB and lives in Gainesville, Florida with her older sister Taylor and mom and dad: Lorraine and Randy.

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  Kaysie Norton was born in February 1996. She has the Dowling Meara-Simplex form of EB, and lives in Orem, Utah with her older brother Cody and her mom and dad: Christy and Benjamin.

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  Scooter was born on May 2nd, 1997. He has EB-Simplex, and lives with his mother Vanna and Paw Paw.